1

 

                DEPARTMENT OF HEALTH AND HUMAN SERVICES

 

                      FOOD AND DRUG ADMINISTRATION

 

              CENTER FOR BIOLOGICS EVALUATION AND RESEARCH

 

 

 

 

 

 

 

            BIOLOGICAL RESPONSE MODIFIERS ADVISORY COMMITTEE

 

                              OPEN SESSION

 

                              Meeting #32

 

 

 

 

 

 

 

 

 

                          Friday, May 10, 2002

 

                               8:10 a.m.

 

 

 

 

 

 

 

 

                              Hilton Hotel

                         Gaithersburg, Maryland

                                                                 2

 

                              PARTICIPANTS

 

      Daniel R. Salomon, M.D., Acting Chair

      Gail Dapolito, Executive Secretary

 

      MEMBERS

 

                Katherine A. High, M.D.

                Richard C. Mulligan, Ph.D.

                Mahendra S. Rao, M.D., Ph.D.

                Alice J. Wolfson, J.D. (Consumer

      Representative)

 

      TEMPORARY VOTING MEMBERS

 

                Martin Dym, M.D.

                Jon W. Gordon, M.D., Ph.D.

                Thomas F. Murray, Ph.D.

                Terence Flotte, M.D.

                Eric T. Juengst, Ph.D.

                R. Jude Samulski, Ph.D.

 

      GUESTS/GUEST SPEAKERS

 

                Valder Arruda, M.D., Ph.D.

                Linda Couto, Ph.D.

                Mark Kay, M.D.

                Stephen M. Rose, Ph.D.

 

      FDA PARTICIPANTS

 

                Jay P. Siegel, M.D.

                Philip D. Noguchi, M.D.

                Daniel Takefman, Ph.D.

                Anne Pilaro, Ph.D.

                                                                 3

 

                            C O N T E N T S

                                                              PAGE

      Welcome/Administrative Remarks

        Dr. Daniel Salomon, Acting Chair                         4

 

      Introduction of Committee                                  5

 

      Conflict of Interest Statement

        Gail Dapolito, Executive Secretary                       8

 

      FDA Introduction

        Potential for Inadvertent Germline Transmission

        of Gene Transfer Vectors: FDA Approach for

        Patient Follow Up

        Daniel Takefman, Ph.D.                                  13

 

      Guest Presentations

        AAV Vector Biology, Jude Samulski, Ph.D.                23

 

      Questions and Answers                                     46

 

        Germline Transmission by Gene Transfer

        Vectors: Assessing the Risk

        Jon Gordon, M.D., Ph.D.                                 61

 

      Questions and Answers                                     84

 

        A Phase I Trial of AAV-Mediated Liver-Directed

        Gene Therapy for Hemophilia B

        Mark Kay, M.D., Ph.D.                                   98

 

        Safety Studies to Support Intrahepatic

        Delivery of AAV, Linda Couto, Ph.D.                    116

 

        Assessing the Risk of Germline Transmission of

        AAV in a Rabbit Model

        Valder Arruda, M.D.                                    130

 

      Questions and Answers                                    144

 

      Open Public Hearing

        Mr. Steven Humes                                       177

        National Hemophilia Foundation

 

        Dr James Johnson, Patient                              184

 

        Dr. Kenneth Chahine, Avigen                            190

 

      Committee Discussion of Questions                        197

                                                                 4

 

  1                      P R O C E E D I N G S

 

  2                         Opening Remarks

 

  3             DR. SALOMON:  Good morning, everybody.

 

  4   Welcome to day two of the Biological Response

 

  5   Modifiers Advisory Committee Meeting No. 32.  I

 

  6   guess we should call it 32B.  We have got a title.

 

  7   I have been complaining and I finally got what I

 

  8   wanted a title for these meetings.  This one, this

 

  9   is good - Vector Pellucida 2002.  Not my title,

 

 10   but, you know, you can't criticize it, I got what I

 

 11   wanted.  Thank you.

 

 12             So, welcome everybody.  Today we have

 

 13   changed the scenery around the table quite a bit.

 

 14   So, to get reoriented, I think we should go back

 

 15   around again this time and introduce ourselves, so

 

 16   that both the audience, as well as each other, has

 

 17   a little sense of who we are and what we are doing.

 

 18             Just if you can introduce yourself, we

 

 19   will just go around the table and give a few

 

 20   sentences on where you are from and what you do,

 

 21   what kind of expertise you bring.

 

 22             In front of you is a button on the thing.

 

 23   It says speaker.  If you push it, it turns red.

 

 24   Talk, and then when you are done, turn it off.

 

 25   Otherwise, there is a funny feedback.  So if I am

                                                                 5

 

  1   ever looking at you, gesturing, it means to turn it

 

  2   off.  It is one of my big duties.

 

  3                    Introduction of Committee

 

  4             DR. DYM:  Martin Dym, Georgetown

 

  5   University.  I worked on the testis and

 

  6   specifically on spermatogonia, which are the male

 

  7   germline stem cells.

 

  8             DR. FLOTTE:  I am Terry Flotte from the

 

  9   University of Florida.  We have been working on AAV

 

 10   biology, AAV vectors and AAV gene therapy.

 

 11             DR. JUENGST:  I am Eric Juengst.  I am in

 

 12   the Department of Bioethics at Case Western Reserve

 

 13   University and recently rotated off the RAC is

 

 14   where my last connection with these issues.

 

 15             DR. MURRAY:  I am Tom Murray.  I am from

 

 16   the Hastings Center, Bioethics, the world's first

 

 17   bioethics research institute, and my work has been

 

 18   in a variety of issues, but quite a lot in

 

 19   genetics, parents, and children.

 

 20             MS. WOLFSON:  I am Alice Wolfson.  I am

 

 21   the Consumer Advocate.  In this incarnation, I am a

 

 22   policyholder's lawyer representing policyholders

 

 23   against their insurance companies when they don't

 

 24   pay what they are supposed to pay.

 

 25             In my previous incarnation, however, I am,

                                                                 6

 

  1   and was, a women's health activist and a founder of

 

  2   the National Women's Health Network.

 

  3             DR. RAO:  My name is Mahendra Rao.  I am

 

  4   in the Intramural Program at the National Institute

 

  5   on Aging.  I am also a member of the BRMAC.  I work

 

  6   on stem cells, most parts of the body, I guess.

 

  7             DR. SALOMON:  Jude, we missed you the

 

  8   first time around.

 

  9             DR. SAMULSKI:  I am Jude Samulski from the

 

 10   University of North Carolina, and work in the area

 

 11   of AAV vectors.

 

 12             DR. SALOMON:  I am Dan Salomon.  I have

 

 13   the pleasure of chairing the committee today.  I am

 

 14   from the Scripps Research Institute in La Jolla,

 

 15   California.  I work on cell transplantation,

 

 16   particularly islet cell transplantation and tissue

 

 17   engineering and therapeutic gene delivery.

 

 18             MS. DAPOLITO:  Gail Dapolito, Center for

 

 19   Biologics.  I am the Executive Secretary of the

 

 20   committee.

 

 21             DR. GORDON:  Jon Gordon from Mount Sinai

 

 22   School of Medicine.  I make a lot of transgenic

 

 23   mouse models of disease and gene therapy for

 

 24   disease.  I was on the RAC.  I am actually the

 

 25   first person to say the word "transgenic," if that

                                                                 7

 

  1   means anything.

 

  2             DR. SALOMON:  It means a lot.

 

  3             DR. PILARO:  I am Anne Pilaro.  I am an

 

  4   expert toxicologist in the Division of Clinical

 

  5   Trials at CBER.  I regulate a lot of the gene

 

  6   therapy protocols, in fact, I think I have 167

 

  7   active right now.

 

  8             DR. TAKEFMAN:  Dan Takefman.  I am a gene

 

  9   therapy product reviewer with the Division of

 

 10   Cellular and Gene Therapies, CBER.

 

 11             DR. NOGUCHI:  Phil Noguchi.  I am director

 

 12   of the Division of Cell and Gene Therapy at CBER.

 

 13             DR. SALOMON:  Welcome.  We will be joined

 

 14   a little bit later by my colleague to the right,

 

 15   Richard Mulligan from Harvard Medical School.

 

 16             This is interesting for two reasons.  One

 

 17   is that this is kind of a revisit to a very

 

 18   important area that the BRMAC dealt with, not the

 

 19   last time, but I guess at least two times ago,

 

 20   where we initially talked about how to address

 

 21   potential regulatory issues specifically with this

 

 22   Avigen trial, and then more generally with how to

 

 23   deal with the potential of infection germline in

 

 24   this case with semen.

 

 25             We got into the whole discussion about

                                                                 8

 

  1   semen versus infecting the motile sperm and what

 

  2   was the evidence, if any, that you could really

 

  3   infect the germline, the spermatogonia, or infect

 

  4   the sperm themselves, and very much tried to deal

 

  5   with some of the practical issues of what you would

 

  6   demand of any company of a sponsor in doing this

 

  7   kind of research, and to do it in such a way that

 

  8   you wouldn't put an unnecessary hold that could

 

  9   therefore interrupt a very important trial unless

 

 10   there was awfully good evidence.

 

 11             It is also very interesting in that it is

 

 12   an interesting theme for the two days.  In some way

 

 13   I am sorry that some of you weren't here yesterday

 

 14   where there we were really talking about another

 

 15   kind of germline transfer issue, the injection of

 

 16   ooplasm into oocytes for infertile women, but it is

 

 17   an interesting thing now to go on to the idea of

 

 18   potentially doing something like this through

 

 19   therapeutic gene delivery.

 

 20             We have to read the conflict of interest.

 

 21   Gail.

 

 22                  Conflict of Interest Statement

 

 23             MS. DAPOLITO:  I would just like to read

 

 24   for the public record, the conflict of interest

 

 25   statement for today's meeting.

                                                                 9

 

  1             Pursuant to the authority granted under

 

  2   the Committee charter, the Director of FDA Center

 

  3   for Biologics Evaluation and Research has appointed

 

  4   Drs. Terence Flotte, Jon Gordon, Eric Juengst,

 

  5   Thomas Murray, Daniel Salomon, and Jude Samulski as

 

  6   temporary voting members for the discussions

 

  7   regarding issues related to germline transmission

 

  8   of gene therapy vectors.

 

  9             Dr. Salomon serves as the Acting Chair for

 

 10   today's session.

 

 11             To determine if any conflicts of interest

 

 12   existed, the Agency reviewed the submitted agenda

 

 13   and all financial interests reported by the meeting

 

 14   participants.  As a result of this review, the

 

 15   following disclosures are being made:

 

 16             In accordance with 18 U.S.C. 208, Drs.

 

 17   Terence Flotte, Jonathan Gordon, Daniel Salomon,

 

 18   and Jude Samulski were granted waivers permitting

 

 19   them to participate fully in the committee

 

 20   discussions.  Dr. Richard Mulligan was granted a

 

 21   limited waiver for this discussion which permits

 

 22   him to participate in the committee discussion

 

 23   without a vote.  Dr. Katherine High recused herself

 

 24   from this committee meeting.

 

 25             In regards to FDA's invited guests, the

                                                                10

 

  1   Agency has determined that services of these guests

 

  2   are essential.  The following interests are being

 

  3   made public to allow meeting participants to

 

  4   objectively evaluate any presentation and/or

 

  5   comments made by the guests related to the

 

  6   discussions of issues of germline transmission of

 

  7   gene therapy vectors.

 

  8             Dr. Valder Arruda is employed by the

 

  9   University of Pennsylvania.  He is involved in the

 

 10   studies of adeno-associated virus vectors.  Dr.

 

 11   Stephen Rose is employed by the Office of

 

 12   Biotechnology Activities, NIH.

 

 13             In the event that the discussions involve

 

 14   other products or firms not already on the agenda,

 

 15   for which FDA's participants have a financial

 

 16   interest, the participants are aware of the need to

 

 17   exclude themselves from such involvement, and their

 

 18   exclusion will be noted for the public record.

 

 19             With respect to all other meeting

 

 20   participants, we ask in the interest of fairness

 

 21   that you state your name, affiliation, and address

 

 22   any current or previous financial involvement with

 

 23   any firm whose product you wish to comment upon.

 

 24             Copies of these waivers addressed in this

 

 25   announcement are available by written request under

                                                                11

 

  1   the Freedom of Information Act.

 

  2             As a final note, as a courtesy to the

 

  3   committee discussants and your neighbors in the

 

  4   audience, we ask that cell phones and pagers be put

 

  5   in silent mode.

 

  6             Thanks.

 

  7             DR. SALOMON:  Thank you, Gail.

 

  8             What we will do here is begin with an FDA

 

  9   introduction from Dan Takefman, will kind of walk

 

 10   us through some of the key issues that the FDA

 

 11   wants to answer.  Remember that part of the dynamic

 

 12   here is that we are an FDA Advisory Committee.

 

 13             There will be times when we all, certainly

 

 14   myself as a scientist, get really interested in

 

 15   some scientific question, but at some point you

 

 16   will have to forgive me if we steer away from that

 

 17   since, if we are not really answering the FDA's

 

 18   question, then, we are not doing what we are

 

 19   supposed to be doing here.

 

 20             In the meantime, though, obviously, to the

 

 21   extent that any of these scientific issues are

 

 22   relevant to answering the questions, you know, you

 

 23   obviously are here and your expertise is greatly

 

 24   welcomed.

 

 25             I guess the other thing, as long as I am

                                                                12

 

  1   giving an introduction on that score, I will just

 

  2   say that we are going to try and come to consensus

 

  3   on some of these questions, but in some instances,

 

  4   there is no consensus, and there is no effort here

 

  5   on my part to force this group into consensus, so

 

  6   well-articulated, minority opinions or even just

 

  7   where we go, I am sorry, but there is no way we can

 

  8   agree on it, that's the kind of information that we

 

  9   need to pin down.

 

 10             So it is important for us to make sure

 

 11   that we have represented everything as evenly as

 

 12   possible for the community.  The last thing I will

 

 13   say to the audience is that I feel you also are

 

 14   participants in this meeting.  This is an open

 

 15   public meeting.  That mike in the center is open. I

 

 16   welcome all of you, if you have something to say,

 

 17   to come up during the meeting during discussion and

 

 18   make your points, and we will definitely be here to

 

 19   listen to them and try and make sure that we do an

 

 20   adequate discussion of this.

 

 21             Dan, you are on.

 

 22                         FDA Introduction

 

 23        Potential for Inadvertent Germline Transmission of

 

 24         Gene Transfer Vectors: FDA Approach for Patient

 

 25                            Follow Up

                                                                13

 

  1                      Daniel Takefman, Ph.D.

 

  2             DR. TAKEFMAN:  Thank you.  I would like to

 

  3   welcome the committee and speakers, and thank

 

  4   everyone for participating in today's meeting.

 

  5             [Slide.

 

  6             The topic for today is the discussion of

 

  7   potential for inadvertent germline transmission of

 

  8   gene transfer vectors, and as Dan said, this has

 

  9   been a topic of previous discussions and public

 

 10   meetings.  Today, we will be discussing the finding

 

 11   of vector sequences in patient semen and to discuss

 

 12   FDA's current approach for patient follow up.

 

 13             [Slide.

 

 14             Concerns regarding inadvertent germline

 

 15   transmission, or IGLT, are twofold.

 

 16   Societal/ethical concerns are based on previous

 

 17   public discussions and publications in which

 

 18   deliberate germline alteration has been deemed

 

 19   unacceptable.

 

 20             Additionally, there are potential adverse

 

 21   biological effects, such as genetic disorders,

 

 22   birth defects, and lethality to developing fetus,

 

 23   just to list a few which are also of concern.

 

 24             [Slide.

 

 25             What is the likelihood that IGLT would be

                                                                14

 

  1   deleterious?  Well, retroviruses have been used as

 

  2   tools to investigate the role of certain genes

 

  3   which are important in development.  I refer to, in

 

  4   this slide, data involving retroviral insertion to

 

  5   the germline of mice and as a specific example, a

 

  6   retrovirus was used to infect a murine blastocyst.

 

  7   In this case, this infection resulted in a mouse

 

  8   strain with a lethal embryonic mutation, which was

 

  9   induced by proviral insertion into the alpha-1

 

 10   collagen gene.  This mutation was recessive, so

 

 11   that the phenotypic effect required homozygosity.

 

 12             [Slide.

 

 13             So data exist suggesting that in the case

 

 14   of retroviruses, deliberate insertion into the

 

 15   germline may be deleterious, but what about data

 

 16   from preclinical animal studies regarding the

 

 17   ability of gene transfer vectors to transmit to the

 

 18   germline?

 

 19             Well, the FDA does require biodistribution

 

 20   studies with gene transfer vectors in relevant

 

 21   animal models.  These biodistribution studies,

 

 22   performed in support of clinical trials, have shown

 

 23   evidence of vector dissemination to gonadal tissue.

 

 24             However, in most studies, vector sequences

 

 25   have not been detected in semen samples, and the

                                                                15

 

  1   point I need to make in regards to these

 

  2   preclinical studies is that they are not always

 

  3   predictive of human experience.

 

  4             A case in point is today's topic in which

 

  5   vector sequences were found in semen from clinical

 

  6   trial subjects, however, initial preclinical

 

  7   studies, such as those done in dogs, demonstrated

 

  8   no detectable vector in semen.

 

  9             Again, certainly in today's case, animal

 

 10   studies are not always predictive.

 

 11             [Slide.

 

 12             I would like to give an update on the kind

 

 13   of current active gene transfer INDs we currently

 

 14   have in file just to give you an idea of what is

 

 15   being used in the clinic.

 

 16             You can see here in regards to retroviral

 

 17   vectors, they are predominantly being used in ex

 

 18   vivo types of gene transfer studies, while

 

 19   adenoviral vectors and plasmids are often being

 

 20   used in direct in vivo type of administrations.

 

 21             You will notice here with AAV vectors,

 

 22   compared to other systems, FDA has seen relatively

 

 23   few gene transfer INDs.  Of the few we have, they

 

 24   are primarily in vivo, localized injection type of

 

 25   administrations.

                                                                16

 

  1             [Slide.

 

  2             I would like to go over some of the

 

  3   factors that FDA considers important for assessing

 

  4   risks of inadvertent germline transmission of gene

 

  5   transfer vectors.

 

  6             Certainly, integration potential of the

 

  7   vectors is important to consider.  Of the current

 

  8   vectors being used in the clinic, FDA is

 

  9   considering both retroviral and AAV vectors as

 

 10   vectors with potential to integrate.  Certainly

 

 11   with retroviruses, as well as lentiviral vectors,

 

 12   they are known to have efficient abilities to

 

 13   integrate and host genomes.

 

 14             In terms of AAV vectors, this system is

 

 15   not as clearly worked out as in other systems, such

 

 16   as retroviruses.  FDA is currently considering AAV

 

 17   vectors as having a low, but potential to integrate

 

 18   in vivo, and I specifically refer here to a couple

 

 19   of papers from Nakai's lab in which he showed low

 

 20   levels of integration in mouse livers.

 

 21             [Slide.

 

 22             The risk of inadvertent germline

 

 23   transmission is also likely highly dependent upon

 

 24   route of administration. An ex vivo gene transfer

 

 25   would likely represent a minimal risk in terms of

                                                                17

 

  1   IGLT, while at the other end of the spectrum, a

 

  2   systemic injection would represent a relatively

 

  3   higher risk in terms of transfer to the germline

 

  4   via hematogenous spread.

 

  5             [Slide.

 

  6             As Dr. Salomon mentioned, IGLT has been a

 

  7   topic of discussion, and I would like to go over

 

  8   some of the previous public discussions in order to

 

  9   put today's meeting in a little perspective.

 

 10             Beginning with the March 1999 RAC meeting,

 

 11   here, there was a focused discussion on preclinical

 

 12   data which demonstrated gonadal distribution.  It

 

 13   was the consensus from this meeting that despite

 

 14   this preclinical data, the probability of

 

 15   inadvertent germline transmission occurring during

 

 16   a gene transfer clinical trial was low.

 

 17             However, further discussion became

 

 18   necessary at the November 2000 BRMAC meeting.  At

 

 19   this meeting, we heard data from a trial which

 

 20   involved I.V. administration of a gammaretroviral

 

 21   vector which contained the factor VIII gene for

 

 22   treatment of hemophilia A.

 

 23             I should point out this was the first

 

 24   trial under IND which involved I.V. administration

 

 25   of a gammaretroviral vector.  Data was presented in

                                                                18

 

  1   which 1 out 12 subjects treated had vector

 

  2   sequences transiently present in semen.

 

  3             In the one patient, vector sequences were

 

  4   detected at only one time point by DNA-PCR.

 

  5             [Slide.

 

  6             Then, at a recent meeting of the RAC, a

 

  7   trial was presented, which will also be presented

 

  8   today, which involved an AAV vector, which contains

 

  9   the factor IX gene for the treatment of hemophilia

 

 10   B.  This is the first trial under IND which

 

 11   involved administration of an AAV vector into the

 

 12   hepatic artery.

 

 13             Data was presented in which vector

 

 14   sequences were found in semen of the first two

 

 15   patients treated.  The first patient had positive

 

 16   PCR signal at multiple time points for up to 10

 

 17   weeks post administration, and the implication here

 

 18   is that all patients treated in this trial may test

 

 19   positive for vector sequences in semen samples.

 

 20             [Slide.

 

 21             So to summarize some of the consensus from

 

 22   these public discussions, there was a consensus

 

 23   from the RAC meeting on preclinical data that the

 

 24   probability of inadvertent germline transmission is

 

 25   low and that the use of a fertile subject

                                                                19

 

  1   population was acceptable.

 

  2             From the BRMAC meeting, the committee

 

  3   agreed with FDA's approach to institute a clinical

 

  4   hold when vector sequences are detected in semen

 

  5   samples from study subjects.

 

  6             There was a consensus from both the RAC

 

  7   and the BRMAC that there is a need to determine if

 

  8   vector is associated with sperm cells.  Using

 

  9   fractionation methods, such as density separation,

 

 10   potential contaminating transduced white blood

 

 11   cells can be removed from sperm cell fractions.

 

 12   You are going to hear more later on from Avigen on

 

 13   their fractionation assays.

 

 14             [Slide.

 

 15             I would like to turn now to FDA's approach

 

 16   for patient follow up, which has been modified in

 

 17   response to these public discussions and from data

 

 18   regarding this current trial.

 

 19             Prior to initiation of the trial, of

 

 20   course, if during preclinical animal studies,

 

 21   vector is found in gonadal tissue, this finding and

 

 22   the potential for germline alterations should be

 

 23   included in informed consent documents.

 

 24             [Slide.

 

 25             As for FDA's current approach for patient

                                                                20

 

  1   follow up, if semen from clinical trial subjects

 

  2   tests positive for vector sequences, the clinical

 

  3   trial will be allowed to continue, however, FDA

 

  4   will request timely follow-up testing of

 

  5   fractionated semen.  As has been in the case in the

 

  6   past, barrier contraception is requested until

 

  7   three consecutive samples test negative.

 

  8             [Slide.

 

  9             Now, if the motile sperm fraction tests

 

 10   positive for vector sequences, FDA will institute a

 

 11   clinical hold and subject enrollment will be

 

 12   stopped until it is determined that the signal from

 

 13   the motile sperm fraction is transient, and

 

 14   specifically, we are asking for serial fractionated

 

 15   samples to test negative three times over three

 

 16   consecutive monthly intervals.

 

 17             [Slide.

 

 18             I would like to turn now to some of the

 

 19   concerns that FDA has.  Specifically, the finding

 

 20   of vector sequences in semen may become more

 

 21   common.  Certainly with subject from trials

 

 22   involving systemic or intrahepatic administration

 

 23   of AAV, such as in this trial, every patient

 

 24   treated might have vector sequences found in semen

 

 25   samples.

                                                                21

 

  1             Additionally, we have new vector classes

 

  2   on the horizon, such as lentiviral vectors, which

 

  3   we know have a high potential to integrate, and

 

  4   there is also new production technologies which

 

  5   allow for higher titer viruses to be produced and

 

  6   new clinical applications of gene delivery systems

 

  7   designed to increase transduction efficiency, all

 

  8   of which may make the detection of vector sequences

 

  9   in subject semen more prevalent in future clinical

 

 10   trials.

 

 11             [Slide.

 

 12             Of particular concern, the fact that

 

 13   patient follow up is difficult with certain

 

 14   populations.  Obviously, there are technical

 

 15   limitations in the ability to monitor women and

 

 16   certain men who are unable to repeatedly supply

 

 17   adequate samples.  There is technical limitations

 

 18   to monitor these subject populations for evidence

 

 19   of germline alterations.

 

 20             The specific concern will be re-presented

 

 21   in the form of a question to the committee for

 

 22   discussion in the afternoon session.

 

 23             [Slide.

 

 24             To summarize, FDA's primary concern of

 

 25   inadvertent germline transmission of gene transfer

                                                                22

 

  1   vectors is with systemic administration of

 

  2   integrating vectors.

 

  3             A clinical hold is instituted only if

 

  4   vector sequences are detected in motile sperm

 

  5   fractions, and the inability to monitor certain

 

  6   patient populations is a concern and warrants

 

  7   further discussion.

 

  8             I will end here and just remind everyone

 

  9   that there is a number of background talks and

 

 10   still data on the clinical trial and preclinical

 

 11   studies to be presented, so I would request that we

 

 12   limit the majority of discussion of patient follow

 

 13   up until the afternoon session, but I will be happy

 

 14   to answer a few questions at this time for

 

 15   clarification.

 

 16             DR. SALOMON:  Thank you, Dan.

 

 17             Are there any questions from the committee

 

 18   to the FDA regarding the overall umbrella charge

 

 19   that we have for today?  Okay.

 

 20             The next are two presentations.  It is a

 

 21   pleasure to start with Jude Samulski from the

 

 22   University of North Carolina to talk to us about

 

 23   the biology of AAV vectors.

 

 24                       Guest Presentations

 

 25                        AAV Vector Biology

                                                                23

 

  1                       Jude Samulski, Ph.D.

 

  2             DR. SAMULSKI:  It is a pleasure to be

 

  3   here.  I want to thank Daniel for asking me to come

 

  4   up.  He requested that I give some type of overview

 

  5   of AAV biology and try to focus a little bit on our

 

  6   understanding of the potential for integration and

 

  7   mechanisms.

 

  8             I think what I am going to do is offer you

 

  9   an opinion of a consensus of what we think is

 

 10   happening in the field, point you in the direction

 

 11   of probably papers that are relevant, that start to

 

 12   show trends that are happening, but more than

 

 13   likely I am going to end up with the conclusion

 

 14   that Daniel has already described, is that AAV is

 

 15   somewhere on that curve as a vector that can

 

 16   integrate, the efficiency is not well established,

 

 17   but the potential is there.

 

 18             I will start off by introducing you to the

 

 19   life cycle of this virus.  In the laboratory, an

 

 20   AAV particle can have a lytic component or a latent

 

 21   component, so we refer to it as a biphasic life

 

 22   cycle.

 

 23             It has been established that it is

 

 24   dependent on a helper virus in order to go through

 

 25   a productive lytic cycle, and in this setting, the

                                                                24

 

  1   virus goes in, reproduces, and progeny comes back

 

  2   out.

 

  3             What was established in the laboratory in

 

  4   the early seventies was that if you took AAV

 

  5   particles and put them in cells in the absence of

 

  6   the helper, you could see this persistence, what

 

  7   was referred to as "latency," and in this setting,

 

  8   it was determined that the virus was establishing

 

  9   an integration event in the chromosome, and in this

 

 10   integration event, it appeared to be targeting,

 

 11   meaning it was going to a specific locus in the

 

 12   human genome.

 

 13             This was all done in vitro and tissue

 

 14   culture cells, and to complete the biological life

 

 15   cycle, if you take these cells and now superinfect

 

 16   them with adenovirus, AAV has the ability to come

 

 17   back out of the chromosome and reenter its lytic

 

 18   component.

 

 19             So in the laboratory, it was established

 

 20   the mechanism in which we could argue how AAV,

 

 21   which was found in nature in clinical isolates of

 

 22   adenovirus, how these two would co-persist, but we

 

 23   could also explain a question of what is the

 

 24   consequences of AAV infecting the cell in the

 

 25   absence of its helper.  Is that genetic suicide? 

                                                                25

 

  1   That answer was no, the virus has a mechanism of

 

  2   persistence.

 

  3             I should argue that there is absolutely

 

  4   zero data of AAV integration in humans.  This is

 

  5   all established in vitro, and it is inferred that

 

  6   this mechanism can take place.

 

  7             I should also mention that the early

 

  8   studies of AAV showing up in clinical isolates, it

 

  9   has only been isolated in adenovirus, although

 

 10   herpes can supply the same helper function.  There

 

 11   has never been a clinical isolate of herpes that

 

 12   has had a contamination of AAV.

 

 13             So what you should be asking yourself is

 

 14   that we can mimic a paradigm in tissue culture and

 

 15   substitute other viruses, but what appears to be

 

 16   out there in nature is this co-relationship.  This

 

 17   was established in vitro, and it is presumed that

 

 18   this can also happen in vivo.

 

 19             The genome is fairly simple.  It is about

 

 20   5,000 base pairs, and what is of importance today

 

 21   is paying a little bit of attention to what is

 

 22   referred to as the Rep genes and the inverted

 

 23   terminal repeats of the virus, which are the

 

 24   origins of replication, the packaging signal, and

 

 25   what appear to be the break points that join

                                                                26

 

  1   recombination events with the chromosome.

 

  2             Of the Rep genes that are made, it has

 

  3   been shown that it is the large Rep proteins, Rep

 

  4   78 and 68, that appear to be responsible for the

 

  5   integration events.  I just want to point out that

 

  6   in AAV, these are identical proteins. They only

 

  7   differ by a splice variate, and in the absence of

 

  8   adenovirus, this is the dominant protein that you

 

  9   see in the presence of adenovirus.  This comes on

 

 10   first and then it switches over to Rep 68.

 

 11             They all have enzymatically identical

 

 12   activities. They bind to the AAV terminal repeat

 

 13   and what is called a Rep binding element.  They

 

 14   have a site-specific, strand-specific endonuclease

 

 15   activity where they can nick this molecule, and

 

 16   they have helicase activity which allows it to

 

 17   unravel to DNA.

 

 18             So we see a relationship with the Rep

 

 19   proteins were the key element on the virus, which

 

 20   is the origin of replication, showing that it has a

 

 21   binding site, a nicking site, and enzymatic

 

 22   activities to allow this virus to replicate.

 

 23             So the first evidence of AAV integrating

 

 24   site specifically was generated in Ken Burns' lab

 

 25   in 1996, and in this study, what they did was

                                                                27

 

  1   pulled out some junctions, sequenced the junctions,

 

  2   and went back and used those sequences as probes.

 

  3             This is just a representative example from

 

  4   our lab that shows that if you look at your

 

  5   chromosome 19 locus in a control cell, it is about

 

  6   a 2.6 kilobase fragment, but after you integrate

 

  7   and establish independent clones, you can find

 

  8   variance that show evidence that the chromosome

 

  9   sequence now has a rearrangement suggestive of an

 

 10   insertion, and some of these are multiple fragments

 

 11   showing that there is amplification and

 

 12   rearrangement.

 

 13             If you take a blot like this and strip off

 

 14   the chromosome 19 probe and then come back with the

 

 15   viral probe, you can see there is co-segregation of

 

 16   these viral sequences with these chromosome 19

 

 17   rearranged, so this was the data that said there

 

 18   was a preferred site of integration, a

 

 19   rearrangement of chromosome 19 and a

 

 20   co-localization of these sequences with chromosome

 

 21   19 sequences.

 

 22             Ken Burns and others looked in detail to

 

 23   bring to try to understand why was this virus going

 

 24   to this specific locus, and from that study came

 

 25   the following information.

                                                                28

 

  1             There is an identical Rep binding site and

 

  2   a nicking site located on human chromosome 19, so

 

  3   what we had was a mechanism that is virtually of

 

  4   viral origin sitting on chromosome 19, that gave a

 

  5   putative reason for why this site is preferred as

 

  6   an integration locus over any other sequence in the

 

  7   human genome.

 

  8             What I should point out is that further

 

  9   studies have shown that not only is the Rep binding

 

 10   required, the spacing between this binding site to

 

 11   the nicking site and the nicking site itself, so if

 

 12   you take these sequences and count them up, there

 

 13   are over 15 base pairs.

 

 14             It is argued that a sequence over 15

 

 15   nucleotides is only represented one time in the

 

 16   human genome.  This is probably why this virus is

 

 17   only targeting this locus.  This element is present

 

 18   in about 200,000 copies in the human genome, which

 

 19   would argue that the Rep protein is sitting on lots

 

 20   of spots on the human chromosome, but it is only

 

 21   when it is this context that it can initiate the

 

 22   event to promote the integration step.

 

 23             So we have a model and a mechanism that is

 

 24   being supported both in vitro and in vivo.

 

 25             A group in Italy went on to show that the

                                                                29

 

  1   site has an open chromatin confirmation and that it

 

  2   is not a closed site, so it is not a site that is

 

  3   unaccessible.  All of these things are beginning to

 

  4   support the type of DNA structure that AAV needs to

 

  5   see in order to go into the chromosome.

 

  6             A number of labs, including our own, have

 

  7   gone after looking at these integration events, and

 

  8   most of you are pretty well aware, that if you look

 

  9   at retroviral integration event, it is a fair

 

 10   precise cut and paste mechanism in which it cuts

 

 11   the chromosome, integrates its genome, and there is

 

 12   like a 3 to 5 nucleotide duplication on either

 

 13   side.

 

 14             When you looked at these AAV proviral

 

 15   structures, what we saw was there were a lot of

 

 16   tandem repeats, amplification events, and all of

 

 17   these things were supporting a type of integration

 

 18   that was completely different than the

 

 19   well-characterized retrovirus integration.

 

 20             This has been consistent both in cell

 

 21   lines, as well as episomal integration events, as

 

 22   well as in vitro systems, so there is a mechanism

 

 23   for integration that is not consistent with a cut

 

 24   and paste.  It is referred to as a non-homologous

 

 25   amplification mechanism.

                                                                30

 

  1             Our lab and others went on to look at the

 

  2   break points between the viral terminal repeat,

 

  3   which I showed you has this origin activity, and

 

  4   this hairpin structure, and the junctions between

 

  5   that and chromosome 19.

 

  6             What you can see was there was very little

 

  7   fidelity and conserving the integrity of the

 

  8   terminal repeat.  You would get break points that

 

  9   were scattered throughout these hairpins, and these

 

 10   are just positioned here on the sequence to give

 

 11   you an impression that there is no fixed break

 

 12   point between the viral sequence and the chromosome

 

 13   19.  They cluster around this hairpin element, but

 

 14   other than that, you can virtually find break

 

 15   points throughout these sequences.

 

 16             If you look at that from a biological

 

 17   point of view, it again suggests that AAV may have

 

 18   a problem in retaining its integrity as a virus if

 

 19   it's indiscriminately breaking these hairpins and

 

 20   going into the chromosome, but this virus has a

 

 21   phenomenal ability of carrying out a step code gene

 

 22   correction.

 

 23             There is technically two copies of every

 

 24   sequence in the hairpin, and since there is two

 

 25   hairpins, there is the total of four copies on the

                                                                31

 

  1   virus, so between all of these copies, the virus

 

  2   will gene convert back and forth and regenerate

 

  3   these sequences with fair efficiency, so you always

 

  4   get a wild-type virus coming back out even though

 

  5   what is integrated in the chromosome may be

 

  6   somewhat fragmented.

 

  7             Because the virus also integrates in what

 

  8   appears to be head-to-tail concatemers, it is

 

  9   preserving the integrity of these hairpins

 

 10   internally, and again allowing it to use it as a

 

 11   template to amplify and come back out of the

 

 12   chromosome.

 

 13             So to get to the mechanism, Matt Weitzman

 

 14   in Roland Owens' lab did an experiment in the early

 

 15   nineties that said that they could show that the

 

 16   Rep protein of AAV could form a complex between the

 

 17   terminal repeat of the virus and this

 

 18   pre-integration site.

 

 19             Again, this made logical sense because

 

 20   there was the same Rep binding element on both of

 

 21   these sequences. This is just an illustration from

 

 22   Sam Young's data showing the Rep protein bound to

 

 23   the terminal repeats of an AAV vector.  It has an

 

 24   extremely high affinity for the sequence and a Rep

 

 25   complex binding to the same element on chromosome

                                                                32

 

  1   19.  It was data like this and other that began to

 

  2   propose a model that the virus express its Rep

 

  3   protein, it binds to this element on chromosome 19.

 

  4             In vitro, Rob Cotton showed that this is

 

  5   sufficient to start a synchronized single-stranded

 

  6   DNA replication.  So now you have this region of

 

  7   chromosome 19 serving as an origin.  Since the Rep

 

  8   protein is terminally attached to this chromosomal

 

  9   sequence, and you can reinitiate, we feel that

 

 10   there is a number of initiation events that are

 

 11   taking place on this region of chromosome 19.

 

 12             It should be understood that there is an

 

 13   enzyme called Fen-1 which is a host enzyme, that

 

 14   actually repairs this type of repeated initiation

 

 15   event, however, if you have a hairpin or a protein

 

 16   attached to this, it doesn't have the ability to

 

 17   correct these sequences.

 

 18             So what happens is you see recombination

 

 19   events taking place to resolve these molecules.  It

 

 20   has been suggested that the AAV genome, which has

 

 21   Rep, allows for Rep-Rep tethering mechanism, as

 

 22   Weitzman showed, and at this point it is all host

 

 23   enzymes that are involved in inserting this

 

 24   sequence into the host genome, and this type of

 

 25   tandem repeat, head-to-tail type of format.

                                                                33

 

  1             This is data that was provided to me by

 

  2   Regina Hildabraun.  It is not published.  It is

 

  3   coming out in a journal Virology.  She has

 

  4   developed a real-time PCR assay to look at the

 

  5   efficiency of AAV viruses to go to chromosome 19.

 

  6   It is a PCR assay that look at the terminal repeat

 

  7   and a locus on chromosome 19.

 

  8             What I think is important to see here is

 

  9   that she can score integration events taking place

 

 10   over the first 72 hours or so, but the most

 

 11   important thing is that the wild-type virus, which

 

 12   she is seeing an integration event for about 1,000

 

 13   particles, so it is suggest about 0.1 percent of

 

 14   all the AAV virus is capable of carrying out

 

 15   integration.

 

 16             This is completely different than like the

 

 17   retroviruses where it is 100 percent integration.

 

 18             As Daniel said, there is a propensity for

 

 19   the virus to integrate.  The efficiency is what

 

 20   needs to be look at in this setting.

 

 21             This is a paper that was published by

 

 22   Ernst Winocour.  I think this is of importance

 

 23   because what I am going to suggest to you is this

 

 24   is another parvovirus called minute virus in mice.

 

 25   It's an autonomous parvovirus.  Nowhere is its life

                                                                34

 

  1   cycle does it establish latency.  It has no

 

  2   mechanism.  There has never been any data

 

  3   supporting it.

 

  4             But what Ernst was able to do was show

 

  5   that these viruses also have terminal repeats, they

 

  6   also have Rep-like proteins, and that he could take

 

  7   an episome substrate and show that this virus could

 

  8   also integrate into a target sequence if the Rep

 

  9   protein on this minute virus was present and if the

 

 10   subsequent sequences were available.

 

 11             So what I think this is suggesting is that

 

 12   the parvoviruses have proteins that are involved in

 

 13   replication that are able to carry out nicking and

 

 14   helicase activity on substrates.  In the case of

 

 15   minute virus of mice, there is no target in the

 

 16   genome.

 

 17             In the case of AAV, there is an origin

 

 18   identical to AAV sitting on chromosome 19.  So the

 

 19   question may be, does AAV really set up a latency

 

 20   or is this an interaction between Rep proteins and

 

 21   target sequences, and 1 percent begins to suggest

 

 22   that it is not a very efficient mechanism.

 

 23             I am going to shift gears and now talk to

 

 24   you about vectors because I think this is where

 

 25   most of the interest is.  In the laboratory, a

                                                                35

 

  1   number of people generate vectors by different

 

  2   procedures.

 

  3             In our lab, we use plasmids to start to

 

  4   make the vector, so now we only retain the terminal

 

  5   repeats.  The gene of interest is in the middle.

 

  6   You have a helper plasmid carrying the Rep and

 

  7   capture genes, and another plasmid carrying the

 

  8   essential sequences from adenovirus to activate all

 

  9   of these steps.

 

 10             What happens when all of these are in the

 

 11   cell, you produce a single virus particle, which is

 

 12   an AAV particle carrying the foreign gene of

 

 13   interest.  If you take these viruses and put them

 

 14   in tissue culture cells, and put them under

 

 15   selection, what you see is if you go to the

 

 16   chromosome 19 region and look at individual clones

 

 17   that had the vector integrated in the human genome,

 

 18   you don't see a significant rearrangement under

 

 19   chromosome 19 sequence.

 

 20             So unlike wild type where it appeared that

 

 21   70 to 90 percent of the integrations were targeting

 

 22   this locus, the vectors have lost this ability to

 

 23   go to chromosome 19. It has been shown by a number

 

 24   of labs that if you add Rep back to this reaction,

 

 25   these vectors will go to chromosome 19 and

                                                                36

 

  1   integrate.

 

  2             So it is fairly well established now that

 

  3   AAV vectors have no targeting capacity and that

 

  4   what they do have is the capacity to integrate into

 

  5   the chromosome under these selected conditions.

 

  6             This is an approach that Charley Yang took

 

  7   in the lab about seven years ago, in which he made

 

  8   AAV vectors that were carrying a plasmid origin and

 

  9   ampicillin sequence, as well as a selectable

 

 10   mechanism to look at selection in eukaryotic cells.

 

 11             He made this into a virus, allowed it to

 

 12   integrate into the chromosome, and he used enzymes

 

 13   that were cut outside of the viral DNA, closed this

 

 14   up into a circle, and pulled out these so-called

 

 15   cellular junctions, and when he characterized

 

 16   these, he came up with the following results.

 

 17             The break points of the terminal repeat

 

 18   and the chromosome were almost identical to what we

 

 19   saw with wild type.  They clustered around the

 

 20   hairpin structure, but there was no defined break

 

 21   point in any of these vectors.

 

 22             When we looked at the location that they

 

 23   were going into, they appeared to be random on

 

 24   chromosome 17, 7, 1.  We had two examples of it

 

 25   integrating on chromosome 2. But what we were

                                                                37

 

  1   seeing was that all of the characteristics of

 

  2   integration were identical to wild type.  It is

 

  3   just that their targeting ability was lost.

 

  4   Instead of going to 19, it was random.

 

  5             If you look at the vectors, they were

 

  6   again consistent with this head-to-tail mechanism

 

  7   and amplification event or rearrangement event.  I

 

  8   should mention that David Russell has just

 

  9   published a little paper in Nature Medicine that

 

 10   has shown another clustering of these things pulled

 

 11   out of HeLa cells, and we have generated the exact

 

 12   same information.  There is breakage and

 

 13   duplication and some type of random repeats that

 

 14   are being generated.

 

 15             So I want to point out because I think we

 

 16   get misled a lot when we think about AAV's

 

 17   integration and that it is something special.  This

 

 18   ability to form concatemers is something that was

 

 19   documented a number of years ago by Schimke's lab.

 

 20   In fact, if you look at any transgenic animal that

 

 21   has ever been generated, it is always generated in

 

 22   a head-to-tail concatemer formation.

 

 23             If you look at virtually any cell line

 

 24   that is established by plasmids to give stability,

 

 25   it is typically a head-to-tail concatemer, that is

                                                                38

 

  1   going into the chromosome.  So what we see is that

 

  2   AAV is probably using host enzymes to generate

 

  3   these concatemers that eventually go into the

 

  4   chromosome.

 

  5             As I mentioned to you, without the Rep

 

  6   protein, there is no targeting capability.  This

 

  7   integration appears to be random.  The insertion

 

  8   that takes place at the integration site is not a

 

  9   cut and paste mechanism, it's a deletion,

 

 10   amplification, rearrangement, illegitimate type of

 

 11   recombination.

 

 12             This is just our data showing all of the

 

 13   break points that we have generated both with

 

 14   vectors with wild type AAV as far as the junctions

 

 15   that are generated between the terminal repeats and

 

 16   the chromosome, and you can see that again there

 

 17   are preferred clustering sites, but there is no

 

 18   distinct break point that takes place between AAV

 

 19   molecule and the chromosomal DNA sequence.

 

 20             We concluded from this study that when AAV

 

 21   vectors go into cells, it is cellular recombination

 

 22   pathways that are responsible for the integration

 

 23   of that, and that there is no viral participation

 

 24   in this enzymatic step, it is all carried by

 

 25   cellular recombination.

                                                                39

 

  1             If you look at the data that has been

 

  2   generated, it falls under the category of an

 

  3   illegitimate, non-homologous recombination.  This

 

  4   would be true if you put in plasmid DNA,

 

  5   oligonucleotides, any piece of DNA that ends up

 

  6   going into the chromosome.  It is following a

 

  7   pathway that supported cellular enzymes carrying

 

  8   out the integration step.

 

  9             I want to just summarize this and then I

 

 10   am going to switch to the last third of the talk,

 

 11   which is going to just talk about information

 

 12   generated with vectors in animals.

 

 13             Right now, AAV vectors do not target

 

 14   chromosome 19.  They are identical to wild type

 

 15   with respect to the terminal repeat break points.

 

 16   They are essentially identical at this level.  The

 

 17   head-to-tail orientation of vector proviruses, you

 

 18   can find tail-to-tail and head-to-head, but this is

 

 19   pretty much the dominant species you will see.

 

 20             They rearrange to chromosome integration

 

 21   site. There is not a cut and paste mechanism.

 

 22   There is always some type of deletion,

 

 23   amplification, and rearrangement that takes place

 

 24   at the integration locus.

 

 25             So by all these criteria, AAV fits the

                                                                40

 

  1   conditions of an insertional mutagen.  It has the

 

  2   ability to go into the chromosome, and the critical

 

  3   question is at what frequency does it carry out

 

  4   this insertion event.

 

  5             This is where I think we began to

 

  6   accumulate data in the field that drifted us away

 

  7   from all that information that was derived in

 

  8   vitro, and you should understand that the data was

 

  9   derived in vitro was under selected conditions with

 

 10   a gene, such as G418 or neomycin, so that you are

 

 11   only looking at the integration events.

 

 12             In vivo, the first data that began to

 

 13   suggest that this may not be consistent with what

 

 14   was happening in vitro was actually carried out in

 

 15   Terry Flotte's lab where they were looking at

 

 16   adeno-associated viruses in monkeys after

 

 17   administration for airway gene delivery.

 

 18             When they characterized this, they saw

 

 19   that the virus was persisting for a period of time

 

 20   and the virus could be rescued completing all of

 

 21   those steps that we talked about in the life cycle,

 

 22   but it was showing up as an episome.  There was

 

 23   very little data suggesting that this type of

 

 24   persistence was taking place as an integration

 

 25   event.

                                                                41

 

  1             This is a paper that I would like to

 

  2   direct people to, because I think buried in this

 

  3   paper is some really important information.  This

 

  4   was a study carried out in Jim Wilson's lab where

 

  5   what he virtually did was an in vivo selection like

 

  6   what we do with in vitro selection with G418, in an

 

  7   animal model that had a disease for the liver, so

 

  8   the AAV vector was transducing a gene and to

 

  9   deliver, that he could put a selective pressure on.

 

 10             This selective pressure meant that if this

 

 11   liver was to survive, the virus had to integrate.

 

 12   After it integrated, you could see nodules begin to

 

 13   grow of liver cells.  He characterized those

 

 14   nodules.  He showed they had integration events in

 

 15   them.  They were similar to what I have just

 

 16   described for in vitro.

 

 17             They were tandem repeats, rearrangements,

 

 18   and an illegitimate recombination mechanism, but if

 

 19   you go into the paper and dig at the multiplicity

 

 20   of virus that he was putting into the liver, 1012

 

 21   particles per liver, he was only getting about 0.1

 

 22   percent of the liver cells showing an integration

 

 23   event.

 

 24             So I think what Daniel was referring to is

 

 25   where does AAV fit on this curve of an obligated

                                                                42

 

  1   integration event versus the potential to

 

  2   integrate, and this study, under selective

 

  3   pressure, there was a frequency that was derived,

 

  4   which I think may be telling to the type of numbers

 

  5   that may happen in the absence of selection.

 

  6             I point to these last two papers only

 

  7   because it has been characterized in extensive

 

  8   detail in muscle, and I bring up Phil Johnson's

 

  9   study because he now has an abstract that is going

 

 10   to be presented as ASGT, where he is showing that a

 

 11   majority of what I think he calls 98.5 percent of

 

 12   all the vectors that are in skeletal muscle are

 

 13   persisting in episomal form.

 

 14             He does a real-time PCR assay.  I am not

 

 15   going to try to describe his data, it is written in

 

 16   an abstract form, but I think it is something that

 

 17   the field in general will want to look at and see

 

 18   if this will be something that can be used for

 

 19   other target tissues.

 

 20             But it is consistent with the theme.  What

 

 21   I did not talk about here today was any of the data

 

 22   that Mark and Kathy have generated, because I know

 

 23   they are going to speak later and they can tell you

 

 24   specifically what has been derived in their hands,

 

 25   but I think the theme is we see what these vectors,

                                                                43

 

  1   they have the propensity to set up a persistence,

 

  2   the data that has been generated in liver, muscle,

 

  3   lung, and brain is that episomal forms that are

 

  4   predominantly seen, but there is always the

 

  5   potential and evidence for integration.

 

  6             This is the last paper that I am going to

 

  7   point you to, and I am going to just mention this

 

  8   because I think this is going to give us a starting

 

  9   place to begin to understand AAV integration in

 

 10   whole animal.

 

 11             Terry Flotte and his lab have generated

 

 12   some data showing that the DNA-dependent protein

 

 13   kinase, the gene that has mutated in SCID mice,

 

 14   seems to have an impact on the molecular phase of

 

 15   AAV genomes.

 

 16             Again, I am going to paraphrase what

 

 17   Terry's data says, and he can speak to it in more

 

 18   detail because he has got new data that is a little

 

 19   bit more extensive.  It appears that if you knock

 

 20   out this protein kinase, which is involved in

 

 21   immunoglobulin rearrangement as one example of its

 

 22   role in the human cell, the virus appears to

 

 23   integrate more efficiently into the chromosome.

 

 24             This is an enzyme that plays a role in

 

 25   end-to-end joining, and it seems that if you lose

                                                                44

 

  1   the ability of these host enzymes to form the

 

  2   so-called concatemer structure that we all

 

  3   characterize, you can see an increase in

 

  4   integration event takes place.

 

  5             So it appears that if you are defective in

 

  6   one pathway, AAV will just follow another host

 

  7   mechanism for persistence, which is an integration

 

  8   mechanism.

 

  9             Again, if there are any specific

 

 10   questions, I will ask you to direct them to Terry

 

 11   where he can give you the details of what is going

 

 12   on, but what this data tells me is that we probably

 

 13   we will be able to identify these so-called

 

 14   cellular recombination pathways that are

 

 15   influencing AAV vectors when they go into so-called

 

 16   non-dividing tissue.

 

 17             I am going to conclude by trying to

 

 18   reemphasize the following points.  Wild type and

 

 19   AAV vector integration is not very efficient, and

 

 20   this fairly well documented in vitro.  It is

 

 21   something that seems to be a theme that is

 

 22   recurring in vivo.

 

 23             If you look at the ability of the virus to

 

 24   target chromosome 19, it is absolutely dependent on

 

 25   a viral protein called Rep.  The mechanism is now

                                                                45

 

  1   well understood because they are identical binding

 

  2   sites to facilitate this targeting.

 

  3             AAV vectors, which do not have Rep

 

  4   protein, do not have the ability to go to

 

  5   chromosome 19 into the site-specific manner.  If

 

  6   you look at the proviral structure of wild type AAV

 

  7   and vector DNA, they are essentially identical at

 

  8   all levels.

 

  9             The break points and the terminal repeats,

 

 10   the amplification, the concatemerization, and the

 

 11   rearrangement under chromosome sequence is

 

 12   identical whether it's on chromosome 19 or randomly

 

 13   inserted throughout the genome.

 

 14             Finally, with the limited number of

 

 15   studies that are being done, it appears that in

 

 16   non-dividing cells in vivo, the AAV vectors exist

 

 17   predominantly in an episomal form, and again, I

 

 18   will conclude.

 

 19             Daniel basically summarized the AAV field

 

 20   by saying it has the propensity to integrate into

 

 21   the chromosome, where it fits on that rheostat as

 

 22   being very efficient or not efficient, I think it

 

 23   is going to be dependent on more studies in vivo in

 

 24   which we can continue to accumulate data.

 

 25             But as of today, what we keep seeing is

                                                                46

 

  1   some propensity for this episomal form, but the

 

  2   risk is still there, and I will stop there and take

 

  3   questions.

 

  4             DR. SALOMON:  Thank you very much.  Very

 

  5   interesting.

 

  6                               Q&A

 

  7             I have a couple of questions that kind of

 

  8   occurred to me in the setting of thinking about

 

  9   this thing riskwise. You have been very straight

 

 10   about it.  What is interesting is a lot of times

 

 11   when it is introduced for the first time, people

 

 12   talk about OAB, it's a parvovirus, it has been in

 

 13   humans for a really long time, and it has been

 

 14   extremely safe in the sense that it is not

 

 15   associated with any known disease entity, and the

 

 16   implication is many times that therefore, AAV gene

 

 17   therapy as a vector is going to be similarly safe.

 

 18             However, I think what you very clearly

 

 19   point out in all the molecular biology that has

 

 20   been done with the vector is that an AAV vector

 

 21   really isn't anything like a wild-type AAV in the

 

 22   sense that now what you have got mainly is

 

 23   episomes, it is not integrating in chromosome 19,

 

 24   so there is a lot of assurance that one might take

 

 25   from the first part of the data that it is probably

                                                                47

 

  1   not reasonable to carry forward into thinking about

 

  2   AAV vectors.

 

  3             DR. SAMULSKI:  Right.  I will give

 

  4   opinions on both sides.  I think if you look at the

 

  5   biology of the virus, it falls in the biological

 

  6   features, so that we don't see significant immune

 

  7   response generated from AAV infections.  You don't

 

  8   see that with wild type.

 

  9             You don't see the virus taking over the

 

 10   host cell as a lytic virus does, so there is

 

 11   consistency in that aspect of saying AAV is more

 

 12   like its features of being non-pathogenic, but I

 

 13   think you only need to hear what Phil and them

 

 14   mentioned at the RAC probably every time AAV is

 

 15   discussed, you know, this is not normal.  You are

 

 16   putting in 1012 viruses into a focal injection,

 

 17   hundreds of particles, lots of genomes.  This is

 

 18   something that doesn't happen in nature, and so it

 

 19   shouldn't be considered as the viral life cycle,

 

 20   because in that setting, we can't reproduce the

 

 21   viral life cycle.  We are not getting a systemic

 

 22   infection that is disseminating and maybe setting

 

 23   up latency.

 

 24             We are inducing an artificial way of

 

 25   getting persistence.  So I think you are right on

                                                                48

 

  1   the money there. I think what will go back and

 

  2   forth between these systems is how much does the

 

  3   vector mimic wild type.  As far as integration they

 

  4   are identical, it is just one is on 19, the other

 

  5   one is random.

 

  6             So there is some ability to go back and

 

  7   forth as to what is happening.

 

  8             DR. SALOMON:  So the second question I had

 

  9   was I don't know a lot about chromosome 19, so I

 

 10   apologize for what I am certain are stupid

 

 11   questions to the geneticists here, but is it clever

 

 12   that the virus chose this area in chromosome 19, is

 

 13   that a safe area to integrate in that?

 

 14             I guess the follow-up question here would

 

 15   be maybe one thing to think about, has anyone

 

 16   thought about it, is if you add the Rep gene back

 

 17   and let it integrate into a place that we know is

 

 18   safe instead of having all this episomal DNA that

 

 19   we have no idea what it is doing.

 

 20             DR. SAMULSKI:  Your question is something

 

 21   that you would discuss at a cocktail hour, why does

 

 22   AAV go to 19.  We could say mechanistically, there

 

 23   is a viral origin sitting on 19.  Did the virus

 

 24   pick it up from 19 and retrofit it into its life

 

 25   cycle or is that a remnant, some integration event

                                                                49

 

  1   that took place who knows when.

 

  2             It is only conserved in monkeys and

 

  3   humans, so it is a sequence that is not found, so

 

  4   there may be some selective pressure for why that

 

  5   took place.  Is it a safe site?  In tissue culture,

 

  6   we are in HeLa cells, there are 19 chromosomes, 3

 

  7   copies in 19, we can get latency all the time.  In

 

  8   vivo, there hasn't been the kind of studies you

 

  9   would want to see, and if AAV integrates in 19, is

 

 10   that going to be an adverse event.

 

 11             I would argue 19 in liver cells may not be

 

 12   essential, but 19 in another tissue like neuronal

 

 13   cells may be essential, but to get back to your

 

 14   question, which I think is more directed to what is

 

 15   on that locus, there is no gene located at that

 

 16   region.

 

 17             Michael Linden has argued that there is a

 

 18   transcript that can go through this region that is

 

 19   related to a muscle transcript, but from our and

 

 20   other studies, there has never been an integration

 

 21   event that has disrupted that gene or the potential

 

 22   for the gene, but again, there are all tissue

 

 23   culture cells, so I think it is an interesting

 

 24   biology.

 

 25             When we first saw this, what is clustered

                                                                50

 

  1   on chromosome 19 were a lot of genes we would have

 

  2   liked to have seen it go into, the receptor for

 

  3   polio virus, a receptor for a lot of other viruses,

 

  4   and we thought, oh, maybe, AAV will integrate, give

 

  5   the host cell a mechanism of protection from

 

  6   another infections agent, and there would be a

 

  7   reason for why it targets, but this locus is not by

 

  8   those type of genes, although it would have been a

 

  9   nice story.  So it is an unknown.

 

 10             DR. SALOMON:  I had one last question, and

 

 11   that is when it integrates and then almost sort of

 

 12   kind of does its version of concatemerization in

 

 13   that area -- that is not quite exactly what

 

 14   happens, but -- what does it do to the promotor

 

 15   regions in the ITR, is the payload gene still

 

 16   promoted, or does it destroy the promoter region,

 

 17   so you basically have dead genes there?

 

 18             DR. SAMULSKI:  AAV is not like the

 

 19   retrovirusus where it has a promoter, a strong

 

 20   promoter in the LTR.  It has promoter-like

 

 21   activity, but all the cassettes have the promoter

 

 22   built in between the terminal repeats, and so the

 

 23   gene remains intact, the break points seem to be in

 

 24   this buffering area in the terminal repeats.

 

 25             So, again, all of these things are skewed.

                                                                51

 

  1   They are put under selection so you insert the

 

  2   genes that go in intact, and they rescue them out.

 

  3   We can only see the products that E. coli will

 

  4   tolerate, so you have to realize that head-to-head

 

  5   and tail-to-tail formations are not very stable in

 

  6   E. coli, so we are getting a biased opinion every

 

  7   time we pull these out.

 

  8             The PCR reaction is extremely biased

 

  9   because that is Mother Nature's best primer, it's

 

 10   an 80 percent GC hairpin structure.  If you try to

 

 11   prime through that region, you will generate

 

 12   deletions, so we even think a lot of our data

 

 13   showing break points is an artifact of pulling out

 

 14   junctions.

 

 15             The only data that begins to support that

 

 16   if you have a real controlled Rep expression, you

 

 17   don't see as much amplification rearrangement.  The

 

 18   group in Italy put the Rep gene on the regulatable

 

 19   promoter, and they actually dosed in the amount of

 

 20   Rep, and what they was the integrations were more

 

 21   well behaved.

 

 22             So I would say that we have not been able

 

 23   to mimic what probably the virus does very well,

 

 24   but we can score all the downstream events.  It

 

 25   goes in a chromosome, it looks like this, and so

                                                                52

 

  1   forth.

 

  2             So I would be hesitant about taking my

 

  3   opinion about this field and turning it into this

 

  4   is the fact of all it all happened.

 

  5             For the vectors where there is no Rep, and

 

  6   you do see the integration, it is cellular

 

  7   mechanisms that are putting it into the chromosome.

 

  8             DR. SALOMON:  Dr. Rao and then Dr.

 

  9   Mulligan.

 

 10             DR. RAO:  Is there any evidence of

 

 11   mobilization of the integrated thing, wild-type

 

 12   infection?

 

 13             DR. SAMULSKI:  That is a good point.

 

 14   There is the risk of mobilization if you get an

 

 15   added infection and a wild-type AAV infection, so

 

 16   you need a two-hit kinetics to move the vector out

 

 17   of the chromosome.

 

 18             In the laboratory, if you do those

 

 19   experiments, wild-type dominates the product that

 

 20   comes out, because there are more elements that

 

 21   ensure packaging, and they are not in the vectors,

 

 22   but you do mobilize it if you get a two-hit

 

 23   kinetic.

 

 24             DR. RAO:  Is there a rough percentage on

 

 25   that?  I know wild-type predominates, but --

                                                                53

 

  1             DR. SAMULSKI:  Wild-type plate

 

  2   90-something percent of all the virus that comes

 

  3   out, and if you cycle it, it is the only virus that

 

  4   you see.  The vector doesn't compete very well in

 

  5   that setting, but the risk is there, in an in vivo

 

  6   setting.

 

  7             DR. MULLIGAN:  In the in vivo case, the

 

  8   integration question is complicated by all the free

 

  9   copies, and I think it is important that people

 

 10   that are not experts here get a sense of if you had

 

 11   very efficient integration in the sense that you

 

 12   had one copy for large number of cells, but then

 

 13   you had hundreds of unintegrated copies, that would

 

 14   confuse your interpretation, so can you

 

 15   characterize for people how you get at the issue,

 

 16   that is, if you just look at the sum of

 

 17   unintegrated copies, and that is a large number,

 

 18   and then the sum of integrated copies, and that is

 

 19   a small number, then, one conclusion is that you

 

 20   have mainly unintegrated gene transfer, but in

 

 21   principle, on a cell-by-cell basis, you could have

 

 22   very efficient integration, while on top of it you

 

 23   could have a large amount of unintegrated copies.

 

 24             Now, in vitro, I know that is not the case

 

 25   because you can actually directly assess that, but

                                                                54

 

  1   how have the various tests actually ruled out that

 

  2   that is not the case?

 

  3             DR. SAMULSKI:  I think that is a good and

 

  4   hard question.  I think Mark has generated data

 

  5   that begins to look at that where he has put virus

 

  6   in hepatocytes, and he will probably discuss this,

 

  7   and then did a partial hepatectomy to let the liver

 

  8   cells grow, and tried to score how many of those

 

  9   regenerated liver cells still carry a copy

 

 10   suggesting that that fraction had integration, and

 

 11   the ones that lost it were primarily episomal.

 

 12             I will let him describe that, but I don't

 

 13   think there is any good way to assess that

 

 14   question.

 

 15             DR. MULLIGAN:  I would think that now that

 

 16   there is these, in human cells, outlaw PCR

 

 17   approaches, the question is can you actually

 

 18   directly calculate the total absolute number of

 

 19   integrations independent of how much total DNA is

 

 20   there?

 

 21             DR. SAMULSKI:  I don't know how I would do

 

 22   that.  I think this is what Phil Johnson is doing

 

 23   in his abstract.  He is looking at ALU real-time

 

 24   PCR going across genomes and stuff like that.

 

 25             DR. MULLIGAN.  Has anyone looked, like

                                                                55

 

  1   Ernest Whittaker, like his system if you have an

 

  2   adeno-infection or HIV infection, and you all of a

 

  3   sudden do an AAV infection, is the propensity for

 

  4   integration of AAV into, say, HIV, a higher

 

  5   integration because it's unintegrated initially

 

  6   than it would be to go in the chromosome?

 

  7             DR. SAMULSKI:  I think that is another

 

  8   good question, that is, if you are in a cell that

 

  9   has substrates, what is the fate of AAV to those

 

 10   substrates, will it go into them, or a more

 

 11   preferred event.  I don't think anyone has an

 

 12   answer to that, but it's a good question.  It is

 

 13   something that has got to begin to be looked at.

 

 14             I think I would like to just emphasize

 

 15   that AAV in the early days was put in the bone

 

 16   marrow stem cells with a lot of efficiency, and

 

 17   then it was shown that as you tried to amplify

 

 18   these cells, they weren't very good and I think it

 

 19   was speaking directly to the fact that it wasn't

 

 20   integrating and therefore, you could transduce them

 

 21   and get positive cells, but once they are asked to

 

 22   divide, you lost that.

 

 23             So I think why AAV has been such a niche

 

 24   virus for the so-called non-dividing cells is

 

 25   because is can set up this persistence.  I think

                                                                56

 

  1   the integration frequency is probably going to be

 

  2   determined by do non-dividing cells carry out

 

  3   illegitimate recombination, at what rate compared

 

  4   to a dividing cell.  That is going to be an

 

  5   important number that is going to influence the

 

  6   outcome in these type of studies.

 

  7             DR. GORDON:  I have a couple of very quick

 

  8   questions that are just simple factual answers.

 

  9             Where in the life cycle of AAV does the

 

 10   uncoating of the genome take place?  That is one.

 

 11   The second question is you said that when you add

 

 12   Rep back to the vectors, then, you get chromosome

 

 13   19 integration again.  How is it added back, as a

 

 14   gene or as a protein?

 

 15             DR. SAMULSKI:  The answer to the first

 

 16   question is the parvovirus are argued to go into

 

 17   the nucleus and uncoat to release their DNA into

 

 18   the nucleus.  There is probably a capsic component

 

 19   still associated with the virus that is sitting on

 

 20   those terminal repeats that either prevents it

 

 21   from, you know, being naked DNA, but at the same

 

 22   time may recruit other factors to the origin.

 

 23             As far as the second question that you had

 

 24   -- I forgot it already --

 

 25             DR. GORDON:  Adding Rep back.

                                                                57

 

  1             DR. SAMULSKI:  That's my senior moment

 

  2   there.

 

  3             Rep protein has been added both as

 

  4   plasmids, as physical protein injectate, and as

 

  5   inducible protein in the cell line, and all of

 

  6   those will take vectors and allow it to go to

 

  7   chromosome 19.

 

  8             The last thing I will mention is that both

 

  9   the Italian group and our lab have generated a

 

 10   mouse that carries the chromosome 19 locus, and in

 

 11   our case, it is sitting on the X chromosome.  When

 

 12   we put wild-type virus into that, it goes to that

 

 13   chromosome 19 locus even though it's on the X

 

 14   chromosome, again suggesting it's the cis elements

 

 15   that are driving where it goes, and not that it

 

 16   happened to be on 19 in humans, and stuff like

 

 17   that.

 

 18             DR. DYM:  I think you alluded to my

 

 19   question, but i am going to ask it anyways.  Can

 

 20   you clarify or comment on the ability of the AAV to

 

 21   get into dividing cells versus non-dividing cells,

 

 22   and, of course, in the testis, the spermatogonia

 

 23   are very actively dividing, the sperm are not.

 

 24             DR. SAMULSKI:  I think there is no

 

 25   difference between AAV going into dividing or

                                                                58

 

  1   non-dividing cells.  If the receptor is present, it

 

  2   will bind, and then I think the mechanism for

 

  3   internalization is clathrin-coated pits, endosome

 

  4   release, and traffic.

 

  5             If you can carry out those steps, it is

 

  6   indistinguishable whether it's a dividing cell or

 

  7   non-dividing cell.  In the very early days, it was

 

  8   suggested that AAV preferred dividing cells, but

 

  9   that was in vitro looking at selection and

 

 10   therefore you were biasing the system.

 

 11             I think once people went in vivo, they

 

 12   realized that all of that was probably misleading a

 

 13   little bit.

 

 14             DR. MULLIGAN:  You didn't mention about

 

 15   other AAV serotypes, so in principle, the

 

 16   efficiency of the intervention would depend upon

 

 17   just the virus titer.

 

 18             Do you have any sense that AAV-1, for

 

 19   instance, which in muscle is much, much more

 

 20   efficient, would potentially be better at infecting

 

 21   germ cells?

 

 22             DR. SAMULSKI:  I think Richard's point is

 

 23   a really interesting one because we and others have

 

 24   seen that the other serotypes have better propisms,

 

 25   are more efficient.  The question is what are their

                                                                59

 

  1   integration mechanisms.

 

  2             The only one that we have data on is Type

 

  3   4.  Type 4, which is camana monkeys, will target

 

  4   monkey cells and integrate, will target human cells

 

  5   and integrate in the chromosome 19, so the

 

  6   wild-type virus will capitulate exactly what the

 

  7   human virus is.

 

  8             The other four, 1, 3, and 5, it is

 

  9   unknown, but they are so homologous, about 80 to 90

 

 10   percent homologous, they all bind to the terminal

 

 11   repeats, they all can package each other's DNA.

 

 12   Chances are they will do the same type of

 

 13   integration.

 

 14             There are differences in these terminal

 

 15   repeats if you look at them.  Type 5 is different

 

 16   than Type 2, and if that is a substrate, that may

 

 17   be more prone for recombination enzymes, you may

 

 18   see an integration frequency that is different.

 

 19             DR. MULLIGAN:  I just meant the capsid,

 

 20   looking at risk for germline infection, if it

 

 21   happens just proportionately, it much better

 

 22   infects that cell and even though integration is

 

 23   very efficient, then you get more efficiency.

 

 24             DR. SAMULSKI:  I misunderstood.  I think

 

 25   if the virus has a more efficient tropism in those

                                                                60

 

  1   kind of cells, chances are the integration

 

  2   frequency is going to be higher.  That is kind of a

 

  3   given.

 

  4             DR. SALOMON:  Sort of a follow-up question

 

  5   here is -- and you may have answered this, and I

 

  6   apologize if you did -- if you have a cell that is

 

  7   actively dividing or is activated, let's say, so it

 

  8   has a lot of open chromatin structures, it is more

 

  9   likely to integrate in that setting than in, let's

 

 10   say, a stable cell that is not activated?

 

 11             Obviously, where I am going is in, you

 

 12   know, if you had an injury or inflammation, or

 

 13   something, are those areas in which the rules might

 

 14   be different?

 

 15             DR. SAMULSKI:  Sure.  I think that is

 

 16   exactly what the data are supporting.  This virus

 

 17   looks for open chromatin contacts.  Events that

 

 18   were scored appeared to be in genes, promoter

 

 19   regions in the gene.  I think they are all because

 

 20   of the same reason, these were open chromatin.  If

 

 21   it's condensed chromatin, there is probably no

 

 22   mechanism, because again it's a cellular event and

 

 23   it is going to be acting on cellular regions of the

 

 24   DNA, better accessible.

 

 25             DR. SALOMON:  That was great.  Thank you.

                                                                61

 

  1             DR. SAMULSKI:  Thank you.

 

  2             DR. SALOMON:  Very useful.

 

  3             The second presentation is on germline

 

  4   transmission by gene transfer vectors and some

 

  5   thoughts on assessing the risk from John Gordon,

 

  6   Mount Sinai School of Medicine.

 

  7          Germline Transmission by Gene Transfer Vectors

 

  8                        Assessing the Risk

 

  9                     Jon Gordon, M.D., Ph.D.

 

 10             DR. GORDON:  I was asked to talk a little

 

 11   bit about not necessarily what we are doing to

 

 12   address this problem in my own lab, but just to

 

 13   talk about what I think are the points of

 

 14   susceptibility for germline integration of vectors

 

 15   into various gametogenic cells and to review the

 

 16   literature on it, so that is what I will do.

 

 17             I am not an embryologist by profession,

 

 18   and I don't wear the lot on spermatogenesis either,

 

 19   but we have a spermatogonium expert in the audience

 

 20   in case I make a mistake, so that will be good.

 

 21             The ontogeny of gametes in relation to

 

 22   their susceptibility to gene insertion.  Primordial

 

 23   germ cells are the cells that ultimately arise to

 

 24   both eggs and sperm, and these arise in the yolk

 

 25   sac or the epiblast in the mouse at about three

                                                                62

 

  1   weeks' gestation in the human.

 

  2             There aren't a very great number of those.

 

  3   They  then migrate by ameboid movement through the

 

  4   dorsal mesentery to the genital ridge.  During this

 

  5   migration process, they also multiply.  These cells

 

  6   are quite easily identified because they stain very

 

  7   strongly for alkaline phosphatase.

 

  8             They arrive to the genital ridges that may

 

  9   be the end of five weeks' gestation in the human.

 

 10   During this period, the cells are unprotected, that

 

 11   is, they are not within the capsule of a gonad, and

 

 12   they are mitotically active, allowing infection by

 

 13   agents that require mitotic activity.  We will

 

 14   return to this point of what agents may require it.

 

 15             Fetal gene therapy must take this risk

 

 16   into account, and the RAC had a sort of mock fetal

 

 17   gene therapy protocol presented one time, and this

 

 18   issue has to be raised.

 

 19             Now, female gametes, which are of a little

 

 20   bit less interest today, but they are important, of

 

 21   course, they become oogonia, and they divide by

 

 22   mitosis until about 5 months or a little longer to

 

 23   generate several million oogonial cells.  At this

 

 24   point, many begin to die, while others become

 

 25   primary oocytes.

                                                                63

 

  1             Primary oocytes enter meiosis, a complete

 

  2   crossing over, and then they stop.  The chromatids

 

  3   remain associated, but crossing over is completely.

 

  4   Then, they are surrounded by follicle cells in what

 

  5   are called primordial follicles.

 

  6             Once they are in the primordial follicle,

 

  7   they become relatively inaccessible because you

 

  8   have to get through the layer of follicle cells,

 

  9   which is a single cell layer basically at this

 

 10   point, in order to reach the egg, which is sitting

 

 11   at the end of crossing over in the so-called

 

 12   dicteate [ph] stage.

 

 13             They sit in this stage until the follicle

 

 14   begins to develop towards ovulation, and there is

 

 15   some hypothesis that this long term association of

 

 16   the chromatids has something to do with chromosome

 

 17   nondisjunction in older eggs.

 

 18             Now, at puberty, the follicle develops in

 

 19   response to FSH from the pituitary.  Numerous

 

 20   follicle cells surrounding the oocyte are within

 

 21   the follicle wall, and they begin to produce

 

 22   glycoprotein "egg shell," the zona pellucida.

 

 23             So, as the egg is developing, then, the

 

 24   number of follicle cells that sit between the egg

 

 25   and the outside world increase, the wall of the

                                                                64

 

  1   follicle becomes a consolidated structure, and the

 

  2   zona pellucida is laid down. This is a glycoprotein

 

  3   human egg shell, mammalian egg shell, very hard to

 

  4   penetrate.

 

  5             As the follicle matures, meiosis resumes,

 

  6   and one resumes, and as the first polar body is

 

  7   released, the chromosomes then move to a metaphase

 

  8   of the second meiotic division, and that is how

 

  9   they are found after ovulation.

 

 10             To enter the egg, genes must past through

 

 11   the follicle wall, they have to get through or

 

 12   between the follicle cells around the egg, and then

 

 13   they have to get through the zona.

 

 14             We would regard the egg as a non-meiotic

 

 15   cell at this point.

 

 16             At ovulation, the egg is in metaphase II

 

 17   and is surrounded by the zona and the granulosa

 

 18   cell layer.  Some of the cells are ovulated with

 

 19   the egg.

 

 20             Although immunoglobulin molecules will

 

 21   pass through the zona, there is no evidence that

 

 22   naked DNA or viruses will do so.  There have been

 

 23   experiments at least with retroviruses that have no

 

 24   viruses that I am aware of where very high amounts

 

 25   have been put onto zona intact eggs, and then lacZ

                                                                65

 

  1   staining look for later in cleavage, for example,

 

  2   without seeing anything.

 

  3             After fertilization, MII is completed with

 

  4   release of the second polar body formation and

 

  5   formation of the female pronucleus.

 

  6             Now, micromanipulation to assist

 

  7   reproduction can assist genetic material in by

 

  8   passing the zona.  I just would like to make the

 

  9   point here of two contrasting papers in the

 

 10   literature, one by an Italian group in I believe

 

 11   now the late eighties, in which they asserted that

 

 12   if you performed in vitro fertilization with

 

 13   plasmid DNA sitting in the medium, about 30 percent

 

 14   of the mice born were positive for transgene

 

 15   sequences.

 

 16             The plasmid they happened to use in this

 

 17   case was a commercially available SV40-based vector

 

 18   and to prove that they had integration in these

 

 19   mice, they cloned the material back out of the

 

 20   mouse genome and sequenced the vector material that

 

 21   was in the mouse genome.

 

 22             The published sequences contain nothing

 

 23   junctional, they were all internal sequences to a

 

 24   commercially published sequence.  They also did a

 

 25   so-called MBO1/DPN1 digest to show that the

                                                                66

 

  1   material was in mammalian cells and was therefore

 

  2   digestible with I believe it's MBO1, if I don't

 

  3   them in backwards order, and the only problem with

 

  4   this southern blot showing disappearance of this

 

  5   band was that the southern blot did not include the

 

  6   molecular weight size that the band was originally

 

  7   in.

 

  8             It stopped before you could get that high

 

  9   up on the gel, which wasn't very high, I might add,

 

 10   about 4.3 kb.

 

 11             So, needless to say, there were a few

 

 12   weaknesses in this publication.  Nonetheless, it

 

 13   made the cover of Cell and was accompanied by a

 

 14   very exuberant editorial saying that this had

 

 15   something to do with evolution, plasmids jumping

 

 16   into gametes out there in the ocean where fish have

 

 17   ex vivo fertilization, for example, and multiple

 

 18   labs tried to repeat this work and 2,300 mice were

 

 19   produced in a number of labs, we tried it too,

 

 20   could not reproduce this work even using the

 

 21   identical reagents, and no one makes transgenic

 

 22   mice this way even though it is a heck of a lot

 

 23   easier than microinjection.

 

 24             However, if you do another experiment, and

 

 25   that is, mix plasmid DNA with sperm, as was done

                                                                67

 

  1   before but now inject the sperm into the egg, so

 

  2   now you are bypassing the zona with a microneedle,

 

  3   and the sperm and DNA around it go into the egg, a

 

  4   significant percentage of the mice are transgenic,

 

  5   and that is a reproducible result.

 

  6             So, in humans, if we think about

 

  7   micromanipulation, and this is something I have

 

  8   been asserting in an editorial that I have in

 

  9   press, we have to think about the fact that the

 

 10   environment had better be clean, because we can get

 

 11   DNA in by that method.

 

 12             My opinion of what occurs here is that the

 

 13   pronucleus forms quickly after the sperm is

 

 14   injected, DNA gets entrapped into it, and it is

 

 15   pretty much the same as microinjecting DNA into a

 

 16   pronucleus.

 

 17             Now, another interesting point is there is

 

 18   there papers indicating that retroviruses and

 

 19   lentiviruses will infect MII oocytes, which are not

 

 20   meiotic reactive, but which do not have a nuclear

 

 21   membrane.  The chromosomes are sitting at a

 

 22   metaphase of the second meiotic division to produce

 

 23   transgenic cattle, monkeys, and mice.

 

 24             I think these papers are very interesting,

 

 25   but there is one slight problem with the assertion

                                                                68

 

  1   that it is the non-meiotic MII oocyte that is the

 

  2   target, and that is, of course, that if you soak

 

  3   MII oocytes in the vector, and then fertilize them,

 

  4   there are still going to be vector around after

 

  5   fertilization, and it is not really possible to

 

  6   completely clean them and then fertilize them to

 

  7   show that you had no vector around at

 

  8   fertilization, so it is possible in my view that

 

  9   fertilization occurred and then these vectors went

 

 10   in.

 

 11             But, nonetheless, you can get MII oocytes

 

 12   transduced with retroviruses and in mice, now

 

 13   lentiviruses from David Baltimore's lab, and again

 

 14   this raises an issue in clinical in vitro

 

 15   fertilization where the zona is opened not

 

 16   infrequently, either for injecting sperm, for

 

 17   biopsying embryos, and so on.

 

 18             Now, male gametes.  Now, in the male, the

 

 19   primordial germ cell step is the same.  They get to

 

 20   the genital ridges as before, but them they become

 

 21   dormant where they are contained within sex cords.

 

 22   They sex cords are like the future seminiferous

 

 23   tubules of the testis, they remain this way.

 

 24             The sex cords have a membranous barrier

 

 25   between them and the outside world, but this is

                                                                69

 

  1   much less protected structure than it becomes after

 

  2   puberty.  The cells are mitotically inactive and

 

  3   relatively unprotected.

 

  4             At puberty, these PGC's become

 

  5   spermatogonia and begin dividing.  Type A

 

  6   spermatogonia are renewable stem cells that produce

 

  7   more Type A spermatogonia, but they can also

 

  8   produce Type B spermatogonia, and those are

 

  9   committed to meiosis.

 

 10             It has been shown, mainly by Ralph

 

 11   Brimster's lab, that spermatogonia can be

 

 12   transduced with retroviruses and lentiviruses, I

 

 13   believe are correct now.  This is one in vitro and

 

 14   it is not clear how efficiently one could

 

 15   accomplish this in an intact testis with intact

 

 16   spermatogenesis.  Perhaps our colleague in the

 

 17   audience, an expert on spermatogonia, can speak to

 

 18   that, but it clearly is biologically possible to

 

 19   transduce them even though it is not very easy.

 

 20             Generally, they are put back into a testis

 

 21   that doesn't have its own spermatogenesis, so that

 

 22   you can sort of have a natural selection for those

 

 23   cells exposed to the vectors in the outside world,

 

 24   and you can get transgenic mice that way.

 

 25             Now, when meiosis beings and the

                                                                70

 

  1   spermatogonia are formed also, the testis becomes

 

  2   organized the seminiferous tubules.  Pre-meiotic

 

  3   cells are at the tubule periphery where agents can

 

  4   get to them, but they will have to get through the

 

  5   tubule wall, but theoretically, they could be

 

  6   reached from a hematogenous spread to the

 

  7   seminiferous tubule.

 

  8             However, Sertoli cells, situated within

 

  9   the seminiferous tubules, form tight junctions that

 

 10   sequester meiotic cells behind what is called the

 

 11   "blood testis barrier," so actually not a barrier

 

 12   between the blood and meiotic cells, it is between

 

 13   the Sertoli calls and the meiotic cells.

 

 14             Sperm move toward the lumen of the tubule

 

 15   as they complete meiosis and morphological

 

 16   transformation.  Now, this barrier is needed, of

 

 17   course, because it doesn't occur because these

 

 18   meiosis-specific proteins don't appear until after

 

 19   puberty, and therefore they are potential

 

 20   immunogens, so this has to be a immunologically

 

 21   privileged site, and that is the rationale for

 

 22   having the blood testis barrier.

 

 23             Meiotic cells are difficult to access

 

 24   except retrograde through sex ducts.  You can

 

 25   inject vectors into the epididymis, for example,

                                                                71

 

  1   and find them in the testis.  So someone is

 

  2   undergoing, for example, prostate gene therapy, it

 

  3   is not at all impossible that one could get vectors

 

  4   moving retrograde back up and thereby get to the

 

  5   cells that are behind the blood testis barrier.

 

  6             Male gametes.  Now, sperm maturation or

 

  7   spermiogenesis, is characterized by a loss of most

 

  8   cytoplasm, replacement of the histones by much

 

  9   tighter binding protamines, and near complete

 

 10   cessation of gene expression.  I say "near" because

 

 11   there are a few post-meiotically expressed genes.

 

 12             Again, what you have to realize is that

 

 13   the idea of sexual reproduction is to give all

 

 14   gametes an equal chance of getting to the egg, and

 

 15   if you have postmeiotic gene expression could have

 

 16   allelic variance which would give sperm an

 

 17   advantage theoretically, and so the organism does

 

 18   everything possible to prevent that.

 

 19             As meiosis begins, actually, once Type B

 

 20   spermatogonia become committed, these cytoplasmic

 

 21   bridges remain between the cells.  These are very

 

 22   large and they allow even mRNA size molecules to

 

 23   pass from one cell to another, so allelic

 

 24   variations between spermatogenic cells, those

 

 25   differences are minimized in terms of their

                                                                72

 

  1   potential impact on spermatogenesis, and then late

 

  2   in spermiogenesis, there are a few genes active,

 

  3   but mainly there are the chromatin is very tightly

 

  4   condensed and very difficult to access.

 

  5             I should point out parenthetically there

 

  6   that there have been papers from Anderson's lab way

 

  7   back when, showing that retroviruses like open

 

  8   chromatin in preference -- or DNA hypersensitive

 

  9   chromatin -- in preference to highly condensed

 

 10   chromatin.

 

 11             The nucleus then becomes surrounded by

 

 12   what I would call the giant lysosome, the acrosome,

 

 13   contains lytic enzymes for presumably digesting

 

 14   your way through the zona in fertilization, and it

 

 15   is difficult to access DNA in the sperm head.

 

 16             Now, again, I would say that there are

 

 17   some papers saying that this has been done

 

 18   successfully.  There is a paper from France saying

 

 19   that pig sperm can be transduced with adenovirus.

 

 20   This paper found lacZ expression in cleaving

 

 21   embryos after exposing sperm to adenovirus, and

 

 22   then found piglets that had mRNA-derived  by RT-PCR

 

 23   that had mRNA derived from adenovirus in multiple

 

 24   tissues of these piglets.

 

 25             Now, I would just analyze this paper a

                                                                73

 

  1   little bit for your benefit, if I might.  The lacZ

 

  2   vector used in that paper was a vector that was

 

  3   received from another laboratory and which had a

 

  4   nuclear localization signal.  So the lacZ should

 

  5   have been in the nucleus of these embryo cells, and

 

  6   indeed, when we have used such things on embryos,

 

  7   we see the nucleus stain.

 

  8             However, the pig embryo is loaded with

 

  9   lipids, and they are basically black.  You can't

 

 10   see the nucleus in a pig embryo, and if you want to

 

 11   inject a pronucleus in a pig to make transgenic

 

 12   pigs, you have to centrifuge the embryo to get the

 

 13   lipid out of the way, so you can even see the

 

 14   structures.

 

 15             So, in the photograph showing lacZ

 

 16   staining of these embryos, there were black embryos

 

 17   that were exposed to the vector, and there were

 

 18   slightly less black embryos that were not exposed

 

 19   to the vector, and the nucleus was not visible in

 

 20   either case.

 

 21             The staining for lacZ was done for 15 days

 

 22   in this experiment, and I would assert to you from

 

 23   my own work with lacZ staining that you could stain

 

 24   your teeth if you did it for 15 days.

 

 25             The staining was on the zona.  There is no

                                                                74

 

  1   reason why there should be staining on the zona,

 

  2   but we have used lacZ staining on embryos with

 

  3   adenovectors on zona-free embryos just exposing the

 

  4   embryo, we never seen staining, not on zona-free,

 

  5   but, for example, injecting it under the zona, we

 

  6   never see zona staining.

 

  7             These people found RT-PCR-positive tissues

 

  8   in all three germ layers of the piglets born, that

 

  9   is, ectoderm, mesoderm, and endodermal derivatives.

 

 10   Now, this vector was replication-defective.  The

 

 11   only possible way to be in all three germ layers is

 

 12   if it integrated and got replicated.

 

 13             However, their southern blots were

 

 14   negative.  To me, that is a very incongruous

 

 15   result, so I don't believe the result, let me just

 

 16   give you my own opinion there.

 

 17             We tried this in mice and could not repeat

 

 18   it, at least in mice.  However, I think this paper

 

 19   and the other paper with the sperm-mediated plasmid

 

 20   transfer speaks to one of the sort of difficult

 

 21   problems for the FDA, I believe. These are

 

 22   published data and it is very difficult to say, oh,

 

 23   well, that's great, but it is not a good paper, so

 

 24   we will just ignore it.  It is very difficult to

 

 25   ignore it when people say they are doing these

                                                                75

 

  1   kinds of things successfully, then, one has to step

 

  2   in and address it.

 

  3             Male gametes continued.  Now, the mature

 

  4   sperm on route to release can be exposed to vectors

 

  5   via fluid from the seminal vesicle, prostate, and

 

  6   in the urethra, a small amount of urine, as well,

 

  7   although maybe you are uncomfortable to see or hear

 

  8   that, it's true.

 

  9             Virus found in the ejaculate could be from

 

 10   any of these four sources or from the sperm

 

 11   themselves if somehow it got there, and I should

 

 12   say that one could imagine all also that the cells

 

 13   that line the sex ducts could be received vector

 

 14   from the bloodstream and then pass it on

 

 15   theoretically to sperm although I think that is

 

 16   very unlikely.

 

 17             As vectors diversify, though, we can't

 

 18   completely rule that out.  Reports of successful

 

 19   transduction of mature sperm are difficult to

 

 20   repeat, and I have already discussed that.

 

 21             Male gametes continued.  When sperm bind

 

 22   to the zona, they undergo the acrosome reaction.

 

 23   The acrosome reaction is fusion of the outer

 

 24   acrosome membrane.  You remember the acrosome is

 

 25   the giant lysosome.  The best way to think of this,

                                                                76

 

  1   as I have told my family, it seems to work on them,

 

  2   if a fist put in a pillow, a soft pillow, and that

 

  3   put into a garbage bag.

 

  4             Now, the soft pillow is the acrosome, and

 

  5   the fist is the nucleus, so the nuclear membrane is

 

  6   coming in contact with the inner acrosomal

 

  7   membrane.  Then, you have the feathers, which is

 

  8   the acrosomal contents, then, the outer acrosomal

 

  9   membrane, the other side of the pillow, and then

 

 10   that is right underneath the plasma membrane, the

 

 11   plastic bag.

 

 12             Well, if you slash open the plastic bag

 

 13   and the outer side of the pillow, and sew those

 

 14   seams together, you will release all the feathers

 

 15   to the outside.  The acrosome reaction occurs, and

 

 16   the bottom line of that is a lot of the sperm

 

 17   plasma membrane is lost.

 

 18             So even passive association of genetic

 

 19   material with the membrane, a lot of it can be

 

 20   lost.  However, often the entire sperm is

 

 21   incorporated into the egg and the plasma membrane

 

 22   and components associated with the tail may still

 

 23   be there, so it is possible to passively get it in,

 

 24   I think.

 

 25             Now, shortly after fertilization, sperm

                                                                77

 

  1   head decondenses to form the male pronucleus.  DNA

 

  2   replication begins.  Genetic material that enters

 

  3   the egg with sperm, as I pointed out, from these

 

  4   microinjection of sperm experiments, you can have a

 

  5   relatively highly frequent integration.

 

  6             Now, the early embryo, I wanted to mention

 

  7   it because of my allusions to IVF, the early embryo

 

  8   cleaves within the protective zone until

 

  9   implantation, when hatching occurs.  Now, hatching

 

 10   and implementation virtually occur concomitantly

 

 11   under normal circumstances, so the embryo is

 

 12   difficult to access even though it has to get out

 

 13   of the zona.

 

 14             However, micromanipulation can open the

 

 15   zona and expose the embryo to gene transfer agents

 

 16   for more extended periods.  Take, for example, the

 

 17   many thousands of IVF cycles that go on every year

 

 18   where the zona is open to theoretically assist

 

 19   hatching.  In my opinion, assisted hatching is of

 

 20   debatable effectiveness, but there have been some

 

 21   papers that embryos from older women implant more

 

 22   frequently if you open the zona, and what happens

 

 23   there is you may open the zone at the four-cell

 

 24   stage, put it in the uterus and it sits there until

 

 25   the blastocyst stage and then implants, and so now

                                                                78

 

  1   you have the naked cells of the zona opened embryo

 

  2   sitting there where agents that may be in there

 

  3   from the woman being infected with something, from

 

  4   the lab technician who had gene therapy, from

 

  5   whatever source, have a much greater time period in

 

  6   which they could get to the embryo.

 

  7             The embryo is quite easily transduced by a

 

  8   variety of agents, retroviruses being the first one

 

  9   done by Yenish in the early seventies, recombinant

 

 10   retroviruses in the mid-eighties, controversy

 

 11   whether adenoviruses integrate.  Our own lab did

 

 12   one where we did early embryos with adenovirus, and

 

 13   what we found was adenovirus was very toxic, so if

 

 14   you put enough in to be sure of getting

 

 15   transduction, the embryos were all killed.  If you

 

 16   put in so little that none of the embryos were

 

 17   killed, you had no transduction, but if you have

 

 18   sort of an intermediate level, then, very rarely

 

 19   you can see PCR-positive tail biopsies in offspring

 

 20   that is clearly a mosaic integration.

 

 21             So it is possible to infect embryos, and

 

 22   as IVF becomes more and more interested in zona

 

 23   opening, let me give you another example,

 

 24   pre-implantation genetic diagnosis.  You may have

 

 25   heard the speech of Frances Collins at the ASGT

                                                                79

 

  1   meeting in California where he went on about

 

  2   pre-implantation genetic diagnosis and result of

 

  3   finding out things from the genome project, for

 

  4   example.

 

  5             Well, pre-implantation genetic diagnosis

 

  6   requires first injection of the sperm because if

 

  7   you do regular IVF, there is hundreds of sperm that

 

  8   are still around and many bound to the zona.  When

 

  9   you then biopsy the embryo for PCR, if one of those

 

 10   other sperm gets into your PCR reaction, you are

 

 11   looking for one molecule here, that is, or two

 

 12   molecules, to genotype the embryo, an extraneous

 

 13   sperm is unacceptable, so you have to do ICSI, that

 

 14   is, intra-cytoplasmic sperm injection.

 

 15             Well, that opens the zona, and as I

 

 16   pointed out before, it is very easy to make

 

 17   transgenic mice if you do ICSI with DNA in the

 

 18   medium.

 

 19             Then, you go back later and open the zona

 

 20   again, but this time a much bigger hole, so that

 

 21   you can take a cell off to do genetic diagnosis,

 

 22   and so I think from the point of view of germline

 

 23   transmission, it is much more risky thing to do

 

 24   than just tell the women to get pregnant. She will

 

 25   have a 75 percent chance then of having a baby that

                                                                80

 

  1   hasn't have genetic disease in the case of

 

  2   recessive genetic disease.  She has a 100 percent

 

  3   change of getting pregnant, of course, while in

 

  4   pre-implantation genetic diagnosis, her chances are

 

  5   only 20 percent.  It is going to cost her nothing

 

  6   to get pregnant, while in pre-implantation genetic

 

  7   diagnosis, it costs about $15,000 to get pregnant.

 

  8   Then, she has no risk of all these other things,

 

  9   which, of course, in pre-implantation genetic

 

 10   diagnosis, she has.

 

 11             I might also add that she has to be

 

 12   superovulated for pre-implantation genetic

 

 13   diagnosis.  There have been deaths from

 

 14   hyperstimulation syndrome.  There have been

 

 15   problems with surgical retrieval of oocytes.  I was

 

 16   a little angry with Frances for always saying that

 

 17   instead of saying how about just doing prenatal

 

 18   diagnosis and doing an abortion in the quarter of

 

 19   cases where it is necessary.

 

 20             I just thought I would give you a few

 

 21   pictures here.  There is spermatogenesis in a

 

 22   normal testis.  Actually, it is a seminiferous

 

 23   tubule that we injected with adenovirus vector, and

 

 24   the periphery of the less mature sperm cells.  As

 

 25   you see, you move towards the periphery, the sperm

                                                                81

 

  1   heads become condensed and you can see tails, and

 

  2   so on.

 

  3             Then, they are released into the lumen of

 

  4   the tubule and then may go out.  I said there is

 

  5   minimal cytoplasm on sperm, but a normal variant in

 

  6   sperm is a so-called cytoplasmic droplet, which

 

  7   kind of like hangs behind the mid-piece of the

 

  8   sperm, so there can be a significant amount of

 

  9   cytoplasm in ejaculated sperm.

 

 10             Here is a developing egg. I was pointing

 

 11   out to you the barriers of penetration of this

 

 12   structure for its virovector.  Here is the DA

 

 13   nucleus.  You can't see the incipient zona

 

 14   pellucida, but there is a very white band around as

 

 15   it is beginning to form, many follicle cells

 

 16   around, and then the follicle wall.  So it is

 

 17   difficult to get there.

 

 18             This is some experiments we did when

 

 19   injecting adenovirus vector into the ovary at

 

 20   unbelievable concentrations against any for lacZ.

 

 21   You can see that this vector didn't want to get

 

 22   into the follicle.  The eggs didn't make it through

 

 23   frozen section, so we have done

 

 24   immunohistochemistry to show that the follicle is

 

 25   not penetrated.

                                                                82

 

  1             Here is injection directly into the

 

  2   seminiferous tubule.  My contention is that we

 

  3   should do provocative experiments that tell us

 

  4   whether or not it is biologically possible to

 

  5   transduce these cells, because in the future, gene

 

  6   therapy will be promulgated, vectors will

 

  7   diversify, their tropisms will change, their

 

  8   structures will change, the methods of

 

  9   administrations will change, and the number of

 

 10   people treated will grow, so we need to know can

 

 11   these things actually get in, not we need to design

 

 12   experiments not to show ourselves as they probably

 

 13   won't happen.  We need to do experiments to tell us

 

 14   whether or not it can happen, so that we can write

 

 15   the proper consent forms.

 

 16             When we do adenovirus vectors into

 

 17   seminiferous tubules directly in a procedure we

 

 18   call seminiferous tubule cannulation, we see a lot

 

 19   of staining for lacZ, this is immunohistochemical,

 

 20   in the periphery, and it looks as if Sertoli cells

 

 21   are the transduced cells.

 

 22             This is a Sertoli cell.  It is sort of

 

 23   anchored to the periphery of the tubule and extends

 

 24   its way in.  The Sertoli cell surrounds the

 

 25   spermatogenic cell and sort of helps it complete

                                                                83

 

  1   spermatogenesis, and, by the way, also concentrates

 

  2   androgens to very high levels in this region of the

 

  3   testis.

 

  4             We are doing this test to ask ourselves

 

  5   can we transduce these intermediate cells that are

 

  6   behind the blood testis area by injecting vector

 

  7   directly into an intact seminiferous tubule.  We

 

  8   believe that this suggests no, but we think we need

 

  9   to go to nucleic acid hybridization to really know

 

 10   because especially like for AAV, which has a

 

 11   delayed expression, we need to know where the

 

 12   genetic material actually is.

 

 13             This is just a view of the acrosome

 

 14   reaction.  This is the acrosome.  With those

 

 15   enzymes for getting through the zona pellucida, the

 

 16   main one is a proteolytic enzyme acrosome, and I

 

 17   hate to say this, but there is a paper from Japan

 

 18   where acrosome was knocked out and the mice were

 

 19   completely fertile.  It has never been repeated,

 

 20   but everybody believes it.  That is rather a shock,

 

 21   I must say.

 

 22             You can see how much of the plasmid memory

 

 23   can be lost in the acrosome reaction.

 

 24             That is the summary them of where

 

 25   gametogenesis is more or less susceptible to being

                                                                84

 

  1   genetically transduced.

 

  2             DR. SALOMON:  Thank you very much, Jon.

 

  3   That was excellent.

 

  4                               Q&A

 

  5             It is interesting that yesterday, we were

 

  6   talking about a procedure that came very close to

 

  7   what you just described, so what they are doing it

 

  8   taking infertile oocytes from the presumed patient

 

  9   or from the infertile mother, and taking normal

 

 10   donor oocytes and injecting the sperm -- it's ICSI

 

 11   -- but also ooplasm from the normal oocyte donor.

 

 12             One of the issues that we discussed in

 

 13   detail was the potential of chromosomal DNA

 

 14   fragments being injected with the ICSI, and you

 

 15   have now given additional evidence. We were

 

 16   concerned of recombination potential, the gene

 

 17   delivery.

 

 18             DR. GORDON:  Well, let me just say that I

 

 19   wrote an editorial to Fertility and Sterility,

 

 20   which is in press, but I haven't received galleys

 

 21   yet, and therefore, there is some concerns about it

 

 22   being released to the committee and then, of

 

 23   course, to the public yet.

 

 24             But I list all these procedures of

 

 25   micromanipulation and their potential risks for

                                                                85

 

  1   inadvertent germline Transmission.  I makes some

 

  2   suggestions about what might be done to sort of do

 

  3   quality control in IVF labs.  That would at least

 

  4   address this issue proactively.

 

  5             I mean should we multiplex PCR media in

 

  6   which we do micromanipulation just to make sure

 

  7   there is not DNA in there, or should we discuss

 

  8   whether or not practitioners of this forms of IVF,

 

  9   we should at least know that they haven't had 1015

 

 10   retroviruses put into them the day before for gene

 

 11   therapy for something, which could happen down the

 

 12   road.

 

 13             I think we should at least begin to study

 

 14   this because there are tens of thousands of cycles

 

 15   done.

 

 16             Now, in terms of the papers of ooplasm

 

 17   transfer, I have a written editorial published, in

 

 18   which I say that the use of germline gene

 

 19   manipulation -- unfortunately, these people did

 

 20   this mitochondrial DNA analysis on newborns who had

 

 21   received ooplasmic transfer, and the found the DNA

 

 22   of the donor cytoplasm in the newborn's bloodstream

 

 23   -- they called this the first germline gene

 

 24   transfer.

 

 25             Well, of course, these new mitochondrial

                                                                86

 

  1   DNAs were not transmitted through the germline yet,

 

  2   so it was a little bit of a loose use of the term,

 

  3   and remember that if it is mitochondria, you can

 

  4   always get rid of it is you just allow the person

 

  5   to be a male who has received all of that, because

 

  6   sperm mitochondria are not transmitted to the next

 

  7   generation.

 

  8             There was a very interesting paper where

 

  9   sperm mitochondria were injected into an egg and

 

 10   destroyed and then liver mitochondria were injected

 

 11   and weren't destroyed, so it seems like the egg

 

 12   knows how to find sperm mitochondria, distinguish

 

 13   them from others and destroy them.

 

 14             So that type of gene transfer if not

 

 15   germline in my opinion, and although these people

 

 16   wanted notoriety for using that phrase, I am not

 

 17   sure they got the one they were looking for, but in

 

 18   any case, that is very easy to thwart. All you have

 

 19   to do is make sure that it's only male reproduction

 

 20   after that.

 

 21             DR. SALOMON:  This is very interesting but

 

 22   we are going to have to stop, because that, we

 

 23   discussed yesterday. Too bad you weren't here.

 

 24             I have one quick question and then we will

 

 25   start from the panel.  In terms of interpreting

                                                                87

 

  1   experiments where you say we looked at gene

 

  2   transfer with adenoviral vectors, they were all

 

  3   adeno that you showed us this time, no AAV, right?

 

  4             It got into the Sertoli cells, for

 

  5   example, it didn't get into the spermatogonia, and

 

  6   from what I looked at, those were spermatogonia,

 

  7   not the more mature spermatids, right, because you

 

  8   were showing right at the edge there --

 

  9             DR. GORDON:  Some maturing, yes, it looked

 

 10   like there might have been spermatogonia.  That

 

 11   slide does not rule out.  That slide shows that we

 

 12   can certainly get a ton of vector there, which I

 

 13   believe is important.  I think provocative tests

 

 14   need to be done, not bloodstream injections where

 

 15   we will never find the cells that got exposed.

 

 16             DR. SALOMON:  The specific question I had

 

 17   is at some point, you point out very well that the

 

 18   DNA in the developing sperm condenses and

 

 19   transcription diminishes dramatically to almost

 

 20   stopping, and I certainly have no expertise in

 

 21   exactly when in the cycle that is happening, but it

 

 22   would seem to me that particularly, experiments

 

 23   done with mature sperm in which you tried to do

 

 24   something that required transcription as the

 

 25   measure of whether you got gene delivered would be

                                                                88

 

  1   a failure because there is no transcription going

 

  2   on, so even if you got gene in, to just take sperm,

 

  3   incubate it with AAV vector or adenovector or any

 

  4   vector, and then show this is not lacZ positive

 

  5   wouldn't mean anything.

 

  6             Did I miss something along the line?

 

  7             DR. GORDON:  Well, I am not so sure how

 

  8   much transcription is needed to get that to occur.

 

  9   I mean you are more a vectorologist than myself,

 

 10   but it would seem to me that if you get a vector

 

 11   into the head of the sperm, that the sperm could

 

 12   then fertilize the egg, and then it would

 

 13   decondense into a pronucleus and development would

 

 14   begin, and any vectors that were in there could

 

 15   then act as if they had just infected a dividing

 

 16   cell line.

 

 17             So, if you could get the sperm to carry it

 

 18   in, you wouldn't have to transduce the sperm,

 

 19   integrate it into the sperm head, but you could

 

 20   certainly get viruses into the embryo by that

 

 21   method theoretically.

 

 22             DR. SALOMON:  Right.  So if you want to

 

 23   test it, you would have to test it several steps

 

 24   down the line, that you have delivered whatever you

 

 25   carried in, got transcription again, make the

                                                                89

 

  1   beta-galactoside gene, then,  you do the colored

 

  2   substrate.  I am just trying to understand.  From

 

  3   what you are saying, if you took just mature sperm

 

  4   and incubated them with a vector, and that might

 

  5   even occur in the -- there is probably a lot of

 

  6   transcription going on in the spermatogonia,

 

  7   though, right?

 

  8             DR. GORDON:  Yes.

 

  9             DR. SALOMON:  That must be a metabolically

 

 10   active cell.

 

 11             DR. GORDON:  Yes.

 

 12             DR. SALOMON:  So this would probably not

 

 13   be a criticism of studies done on the first things

 

 14   you showed.

 

 15             DR. GORDON:  Well, here is what I did.  I

 

 16   exposed sperm to adenovirus vectors, made sure that

 

 17   they got exposed to is, 10, 100 virions per cell,

 

 18   and then I did in vitro fertilization with those

 

 19   same sperm.

 

 20             Then, the embryos that those sperm

 

 21   conceived were evaluated for expression.  The other

 

 22   thing we did was we allowed fetuses to be produced

 

 23   or newborns and we evaluated them by PCR.

 

 24             Now, my opinion is there were a lot of

 

 25   experiments that preceded those in which animals

                                                                90

 

  1   were injected in their brain with adenovirus and

 

  2   then bred.  Well, you know, there is 300 million

 

  3   sperm in a mouse ejaculate, and you are looking at

 

  4   10 of them when you look at 10 pups.  So that is

 

  5   statistically not satisfying.

 

  6             But if you have an in vitro system where

 

  7   every cell is exposed and then you have a way of

 

  8   assessing whether it got in, I think that you are

 

  9   doing much more to really answer the question.

 

 10             DR. FLOTTE:  I had sort of a natural

 

 11   history question.  I was wondering if you had any

 

 12   thoughts about human endogenous retrovirus

 

 13   sequences in our genome and what is the most likely

 

 14   access that those originally had to the human germ

 

 15   line.

 

 16             Then, a follow-up question, do you think

 

 17   there is any significance to the fact that we don't

 

 18   find human endogenous AAV sequences in the genome?

 

 19             DR. GORDON:  The first question.  Well,

 

 20   there is a tiny little sort of moment of

 

 21   accessibility I think at hatching of the embryo in

 

 22   vivo.  The embryo has to hatch out and then

 

 23   implant, and it is naked.  That could be a point

 

 24   where a person who had a lot of viremia or a lot of

 

 25   virus in interstitial uterine fluid that you could

                                                                91

 

  1   get one in.

 

  2             I must say that in mice, retrovirus-like

 

  3   sequences are also found endogenously in the

 

  4   genome.  That, to me, would be a logical place to

 

  5   think of it occurring.  It is very hard to imagine

 

  6   it occurring.  You could also think of a viremic

 

  7   male having it get into a spermatogonia.

 

  8             I mean now that it has been shown that you

 

  9   can get it into spermatogonia, at least in vitro,

 

 10   it might be much less probable in vitro, but if you

 

 11   have 30 million centuries to work on it, you know,

 

 12   you may see it.  So this is exactly the point, of

 

 13   course, about provocative testing, too.

 

 14             So that is my view.  Now, what is the

 

 15   significance of not finding a virus, I mean I

 

 16   really can't say anything about that.  It could be

 

 17   a combination of factors - I haven't looked enough,

 

 18   the virus has too low an integration frequency,

 

 19   there is not a biological setting in which there is

 

 20   good access of a virus at a susceptible point, you

 

 21   know, ontogeny, such as uterine fluid at a time of

 

 22   implantation.

 

 23             So it would only be speculation on my

 

 24   part, I don't know.

 

 25             DR. SALOMON:  Dr. Dym and then Dr. Rao.

                                                                92

 

  1             DR. DYM:  I had a couple of questions, but

 

  2   first I will thank you also for a lucid

 

  3   presentation.  I will just comment briefly that

 

  4   there are a number of people who are using in vivo

 

  5   approaches, as I think you know, to get viruses

 

  6   into the spermatogonia through the seminiferous

 

  7   tubular lumens.  Brimster is one and there was a

 

  8   paper by Blanchard & Vokalhyde in Biology of

 

  9   Reproduction in 1997.

 

 10             Again, they showed that it only went into

 

 11   the Sertoli cells, but Brimster and a number of

 

 12   others, actually, five or six labs, in monkeys and

 

 13   in rodents and in cattle, are using this

 

 14   seminiferous tubule injection or ret-A testis

 

 15   injection.  It is in vivo, but it is not practical.

 

 16   I mean you can't put it in that way normally.

 

 17             But this leads me to my second question

 

 18   having to do with barriers.  You mentioned

 

 19   barriers.  I do believe there are barriers from

 

 20   your work and from other people's work, and that is

 

 21   why probably virus in a muscle or systemic virus

 

 22   may not get into the spermatogonia, but this is in

 

 23   normal animals or maybe in normal people, but the

 

 24   barriers actually break down when there is a

 

 25   diseased person or a diseased animal.

                                                                93

 

  1             I am just wondering if you know anything

 

  2   about that and if, when the barriers break down.

 

  3   Actually, another thought came to mind.  For

 

  4   example, in AIDS patients, the barriers are broken

 

  5   down and the virus, which is circulating in the

 

  6   blood, let's say, from a man who has gotten

 

  7   infected via needle, the virus is in the blood, and

 

  8   then eventually it breaks down and gets into the

 

  9   closed lumen or semen compartments, whether it is

 

 10   testis or epididymis, but it does get across the

 

 11   barrier, so viruses do get across in diseased

 

 12   conditions.

 

 13             Some of these patients you are talking

 

 14   about might have a breakdown of the barrier.

 

 15             DR. GORDON:  I am glad you actually

 

 16   mentioned that because I think it is worth some

 

 17   comment.  First of all, I think viruses might be

 

 18   able to break the barrier and then go through.  I

 

 19   mean viruses can hurt cells, and if you flood cells

 

 20   with them, you might get a weakening of a barrier

 

 21   by the very action of the virus.

 

 22             Then, there are disease states.  Disease

 

 23   states are exposed internal portion of the

 

 24   seminiferous tubules to the outside, I think

 

 25   intuitively are not likely to be so flagrant as to

                                                                94

 

  1   raise the risk significantly just because I think

 

  2   that would have a big impact on spermatogenesis,

 

  3   too, but I did want to say that there are ways --

 

  4   well, the FDA speaker was point out that localized

 

  5   injection is less risky than perhaps systemic

 

  6   injection, but I think one exception should be

 

  7   taken to that, and that is injections into things

 

  8   like the prostate, which by no means is an inactive

 

  9   area of research, so I do agree that while these

 

 10   barriers exist, one cannot predict from that

 

 11   intuition that in all of the settings of gene

 

 12   therapy, where a vector's ability to cross barriers

 

 13   may vary, or a vector's ability to violate the

 

 14   barrier and get in on their own may vary, where

 

 15   disease states may vary.

 

 16             So biologically, these barriers exist, but

 

 17   I think it is quite true that you can by no means

 

 18   be guaranteed that they are going to protect you

 

 19   completely, and provocative testing is needed.

 

 20             DR. RAO:  You give a very nice summary, at

 

 21   least for me, in terms of understanding that there

 

 22   is great protection of the male and female gametes.

 

 23             So, let's say you do, in fact, a patient

 

 24   with adeno-associated virus at some titer, 1011,

 

 25   and now see adeno-associated virus in ejaculate. 

                                                                95

 

  1   What would you speculate as which cell was infected

 

  2   and does it have to actually be an integration

 

  3   event that you are seeing this one year later?

 

  4             DR. GORDON:  No, I don't think it has to

 

  5   be an integration.  A year later is really a long

 

  6   time.  But weeks later, as what happened in this

 

  7   case that probably prompted this discussion, could

 

  8   be in anything, could be seen in the fluid

 

  9   component, could be in other cells, there is always

 

 10   a few white cells perhaps, could be in the debris

 

 11   that would slough off from endothelium, not at all

 

 12   necessarily in sperm, and even if it came out with

 

 13   sperm, that doesn't mean it is in them.  It could

 

 14   be just on them, and washing them could take care

 

 15   of it, or IVF could take care of it.

 

 16             I think it is reasonable if a sperm

 

 17   fraction in infractionated semen is positive to

 

 18   step back and say, well, now, a red flag has been

 

 19   risen.  If you find it in whole semen it really

 

 20   could be from any variety of sources.

 

 21             DR. DYM:  Just one more comment maybe in

 

 22   relation to what you said.  You know, those of us

 

 23   who work in the testis, and there are many of us

 

 24   working on spermatogonia who are actually trying to

 

 25   infect and transduce the spermatogonia and the germ

                                                                96

 

  1   cells, we never think of doing it in the sperm, we

 

  2   always think of doing it in the spermatogonia as

 

  3   the only permanent way.

 

  4             I think that maybe addresses some point

 

  5   that you made.  That would be permanent, you know,

 

  6   generation after generation after generation.  It's

 

  7   an eternal cell, it's an immortal cell, the

 

  8   spermatogonia.  The sperm dies.

 

  9             DR. RAO:  The reason I asked the question

 

 10   was one needs to evaluate, when you are looking at

 

 11   any kind of risk, as to where the virus particle is

 

 12   present, and that is an important thing that we

 

 13   need to clarify if you are going to say that you

 

 14   detected in the sperm or in the ejaculate where is

 

 15   it really going to be present.

 

 16             From what we heard, it is unlikely to be

 

 17   present in the sperm per se, at least in the sperm

 

 18   DNA, and given what we have heard about integration

 

 19   events, maybe it is unlikely to be present in the

 

 20   spermatogonia, but we need to know it.  It is best

 

 21   to ask the expert directly.

 

 22             DR. GORDON:  Well, I just would say that

 

 23   if you found it in semen a year later, I would be a

 

 24   little more worried that it got into is

 

 25   spermatogonium because, as he said, that is an

                                                                97

 

  1   immortal cell.  Spermatogenesis proceeds in waves,

 

  2   and if you get it into any cell that is not the

 

  3   Type A spermatogonium, you may have its appearance,

 

  4   but then it will disappear.

 

  5             That is why people are trying to do

 

  6   spermatogonia, but I must add that there are a

 

  7   number of papers in the literature, none of which I

 

  8   believe, but there is man of them saying that you

 

  9   can get DNA into mature sperm by a variety of

 

 10   methods - opening the epididymis and giving it an

 

 11   electrical shock with your biorad electroparator,

 

 12   people will say that works.  I mean you should see

 

 13   those data, they are so pathetic, but nonetheless,

 

 14   they are published, so what can you say, the data

 

 15   are published.

 

 16             DR. SALOMON:  I would like to call this

 

 17   session to the break.  We will see everybody back

 

 18   in 10 minutes.

 

 19             [Recess.]

 

 20             DR. SALOMON:  We will go ahead and get

 

 21   started.

 

 22             This portion of the session, we are going

 

 23   to have a series of presentations from Avigen and

 

 24   then from the University of Pennsylvania.

 

 25             The next two speakers will provide us some

                                                                98

 

  1   specific information on the AAV vector from Avigen.

 

  2             The first speaker is Mark Kay.  Welcome.

 

  3          A Phase I Trial of AAV-Mediated Liver-Directed

 

  4                  Gene Therapy for Hemophilia B

 

  5                      Mark Kay, M.D., Ph.D.

 

  6             DR. KAY:  Thank you.

 

  7             What I would like to do is summarize our

 

  8   Phase I trial of AAV-mediated liver-directed gene

 

  9   therapy for hemophilia B, which is a collaborative

 

 10   effort between many investigators at Stanford, the

 

 11   Children's Hospital, Philadelphia, and Avigen.

 

 12             [Slide.

 

 13             Today's focus are issues pertaining to the

 

 14   inadvertent germline transmission of AAV vector and

 

 15   what I would like to do is summarize data related

 

 16   the clinical trial to date.

 

 17             [Slide.

 

 18             There has been some discussion about

 

 19   integration of AAV in the liver, and although Jude

 

 20   suggested that I was going to show data about

 

 21   integration, I actually have those slides, but not

 

 22   in this particular talk, so let me just summarize

 

 23   where things are and give some explanation.

 

 24             We know that, in general, if you inject

 

 25   reasonable high doses of AAV into mice that you can

                                                                99

 

  1   get something in the neighborhood of 50 percent of

 

  2   hepatocytes that are stably modified with AAV.  In

 

  3   some situations, it might be slightly higher or

 

  4   lower.

 

  5             Now, it turns out that if you give these

 

  6   regular doses of AAV into mice, the vector genomes

 

  7   actually get into almost 100 percent of the

 

  8   hepatocyte nuclei, but over time, most of those

 

  9   single stranded genomes are lost and here is only a

 

 10   small proportion of cells that remain with stably

 

 11   transduced vector genomes

 

 12             Now, the proportion of integrated genomes

 

 13   is actually small.  Generally, it is actually less

 

 14   than 5 percent.  I think the definitive evidence

 

 15   that AAV integrated in liver was a study done in

 

 16   collaboration with Linda Couto and Hikiyuki [ph]

 

 17   Nikai, where they actually were able to clone out

 

 18   integration junctions, so basically within the

 

 19   vector, they put bacterial origins of replication

 

 20   and then were able to take genomic DNA, put them

 

 21   back in the bacteria, and clone out the covalent

 

 22   linkage of the vector where it integrated into the

 

 23   genome.

 

 24             Now, this was a very useful technology,

 

 25   but it does not quantify how much integration

                                                               100

 

  1   actually occurred.  So we have recently published

 

  2   on studies where we have injected AAV into animals

 

  3   and we wait for a period of time until there is

 

  4   stable transduction, and then what we actually do

 

  5   is a hepatectomy.

 

  6             Now liver cells will equally regenerate,

 

  7   such that each cell divides once or twice, and as a

 

  8   result, DNA genomes that are not associated with

 

  9   centromeres or telimeres are lost, and we have

 

 10   positive and negative controls for this, and what

 

 11   we find is that in most situations, the amount of

 

 12   integrated genomes, of the stable genomes is very

 

 13   small, it is usually less than 5 or 10 percent of

 

 14   the double-stranded vector DNA.

 

 15             Now, gene expression from the integrated

 

 16   forms, which again is small, and the episomal

 

 17   forms, parallels the proportion of vector DNA in

 

 18   each state, so if you do a partial hepatectomy and

 

 19   you look at the amount of vector genomes before and

 

 20   after, you get around 90 to 95 percent reduction

 

 21   both in gene expression and in number of genomes,

 

 22   again indicating that most of the expression comes

 

 23   from the episomal forms.

 

 24             There is no detectable increase in the

 

 25   proportion of integrated genomes over time, and

                                                               101

 

  1   very recently we have tried to push these animals,

 

  2   giving them extremely high doses in the range of

 

  3   1014 to 1015 per kilo, and we do not increase the

 

  4   proportion of integrated genomes.

 

  5             The proportion of transduced cells with

 

  6   integrated genomes is small and most integrates

 

  7   that when we have actually molelecularly analyzed

 

  8   them are 1 or 2 copy genomes.

 

  9             [Slide.

 

 10             The clinical trial objective is to test

 

 11   the hypothesis that AAV mediated liver-directed

 

 12   gene transfer is safe; characterize the human

 

 13   immune response to the transgene product and to the

 

 14   vector; determine whether germline transmission of

 

 15   vector occurs following hepatic administration; and

 

 16   determine dose capable of producing clinically

 

 17   relevant factor IX levels in the blood.

 

 18             [Slide.

 

 19             It's a Phase I open-label, dose escalation

 

 20   safety trial of AAV Human Factor IX administration

 

 21   by infusion into the hepatic artery.

 

 22             [Slide.

 

 23             The vector is infused into the liver via a

 

 24   balloon occlusion catheter placed in the hepatic

 

 25   artery, and Factor IX protein is administered

                                                               102

 

  1   before and follow the procedure to cover the

 

  2   patients from any type of bleeding.

 

  3             Subjects are observed for at least 24

 

  4   hours

 

  5             [Slide.

 

  6             This is the dose escalation plan of the

 

  7   trial as it is written.  The dose in vector genomes

 

  8   is 2 x 1011 per kilogram.  The observed levels in

 

  9   mice is somewhere between undetectable and 1

 

 10   percent.

 

 11             Importantly, is that when you get into the

 

 12   second cohort, we were at a dose of 1 x 1012 per

 

 13   kilo, and in dogs that were given a similar, not

 

 14   identical vector, levels in the range of 4 to 12

 

 15   percent are achieved.

 

 16             These levels of Factor IX would result in

 

 17   a substantial improvement in the clinical course

 

 18   with the individuals going from a severe phenotype

 

 19   to that of a much milder phenotype.  So this would

 

 20   be somewhere in an efficacious range, so the point

 

 21   is that at doses within this trial, we are at

 

 22   efficacious doses in a dog model of hemophilia.

 

 23             [Pause.]

 

 24             DR. KAY:  I am really sorry.  There was a

 

 25   mix-up about transferring the slides, so I

                                                               103

 

  1   apologize.

 

  2             This was just an introductory slide about

 

  3   hemophilia, basically that it is a very well

 

  4   understood disease and with sustained levels of 1

 

  5   percent, you can get a therapeutic response, and we

 

  6   do have very good animal models which are the dogs.

 

  7             Now, this is basically what I said, that

 

  8   we have actually been able, we and others and more

 

  9   recently Kathy High's group, has gotten reasonably

 

 10   high and therapeutic levels of canine factor IX in

 

 11   dogs reaching 4 to 12 percent. I won't go through

 

 12   this again

 

 13             [Slide.

 

 14             This is just a photograph of a patient who

 

 15   is being treated here.  As I said, it is through

 

 16   the hepatic artery and they go into the invasive

 

 17   radiology suite. A catheter is inserted into the

 

 18   femoral artery and it is cannulated into the

 

 19   hepatic artery, which can be followed by

 

 20   fluoroscopy here, and then the vector is placed on

 

 21   an infusion pump, as shown here, and then

 

 22   administered at a specific rate into the patient

 

 23             [Slide.

 

 24             Now, the first subject that was treated is

 

 25   a 63-year-old male with severe factor IX

                                                               104

 

  1   deficiency.  Status/post bilateral knee

 

  2   replacements 5 years prior to the procedure.  He is

 

  3   HIV-negative.  He was HCV-positive, but his HCV

 

  4   viral load by PCR was negative on multiple

 

  5   occasions several years apart.  Per our protocol,

 

  6   these patients are considered to have spontaneously

 

  7   cleared HCV, and do not require liver evaluation

 

  8   before being enrolled into the trial.

 

  9             He is the father of 3 and he has a

 

 10   grandson with hemophilia.

 

 11             [Slide.

 

 12             The first procedure was done in August of

 

 13   last year.  He received 2 x 1011 vector genomes per

 

 14   kilogram.  No complications.  He was discharged

 

 15   home to his referring hemophilia treatment center

 

 16   after five days

 

 17             [Slide.

 

 18             This is a summary of his clinical data

 

 19   baseline before the procedure and afterwards out to

 

 20   week 24.  The important point here is that his CBCs

 

 21   have all been within normal limits including

 

 22   platelet counts, which have been an issue with some

 

 23   of the adenovirus trials

 

 24             [Slide.

 

 25             His liver function studies and prothrombin

                                                               105

 

  1   times have also remained normal, as shown here.

 

  2   His ALT and AST are normal, and they remained

 

  3   normal throughout the 24-week period for which  he

 

  4   has bee monitored.

 

  5             So the hepatic administration of this

 

  6   vector in this patient did not appear to have any

 

  7   liver injury

 

  8             [Slide.

 

  9             The coagulation data for this first

 

 10   patient is shown here. His factor IX levels have

 

 11   basically remained at a subtherapeutic or

 

 12   nontherapeutic level.  This basically is

 

 13   background.  Remember that these patients do treat

 

 14   themselves.

 

 15             The important issue here, too, is that

 

 16   this patient did not have detectable factor IX

 

 17   inhibitor by Bethesda assay.

 

 18             [Slide.

 

 19             One of the aspects of the protocol is to

 

 20   monitor the different body fluids for vector

 

 21   shedding and, of course, the reason why we are here

 

 22   today.  This just is a very simplified diagram of

 

 23   the PCR assay that is done by Deb Leonards' group

 

 24   at the University of Pennsylvania

 

 25             [Slide.

                                                               106

 

  1             This shows the actual sequence of the

 

  2   vector and the PCR primers are depicted here as a

 

  3   control for the PCR reaction itself.  Some of the

 

  4   samples are spiked with very small plasmid numbers

 

  5   of a second vector that has the same sequences for

 

  6   the primers, but there has been a deletion of 97

 

  7   base pairs, so one can distinguish between the

 

  8   spiked copy, if you will, and the vector copy

 

  9             [Slide.

 

 10             This just shows an example of one of the

 

 11   gels of this analysis here.  This is the baseline

 

 12   sample here.  This is the spiked sample below, and

 

 13   this is day seven of a body fluid where you can see

 

 14   both the spiked and the actual vector band shown

 

 15   here.  So this gives you an idea of the PCR

 

 16   studies.  Some of these will be discussed again in

 

 17   more detail with some of the preclinical studies.

 

 18             If we look at the vector sequences by PCR,

 

 19   in the different body fluids here, in the first

 

 20   patient, again, we see transient vector DNA up

 

 21   until week 2 in the serum, transiently for a couple

 

 22   of days in saliva, there was none in urine and

 

 23   stool, and white blood cell pellet was done at week

 

 24   12, but that was negative

 

 25             [Slide.

                                                               107

 

  1             This is what was somewhat of a surprise to

 

  2   us based on dog studies we had done.  In fact, when

 

  3   we did look at his vector DNA in semen, we did find

 

  4   that there was DNA present in his semen, but it was

 

  5   transient and it slowly fell off over a period, and

 

  6   after week 12, has remained persistently negative.

 

  7             Now, these samples are performed in

 

  8   triplicate in 1-microgram DNA samples.  When we did

 

  9   get positivity in these first couple of samples, we

 

 10   went to a fractionation procedure to try to

 

 11   fractionate out the motile sperm fraction from the

 

 12   seminal fluid sample and the pellet.

 

 13             Now, in this motile sperm fraction, we

 

 14   were only able to get 220 nanograms of DNA, so it

 

 15   wasn't the 1 microgram, but this amount of DNA was

 

 16   PCR-negative in this individual.

 

 17             I also want to point out the sensitivity

 

 18   of the assay is less than 1 copy per 30,000 haploid

 

 19   genomes or, in other words, 1 copy per 30,000

 

 20   sperm.

 

 21             Now, as a result of this result, we did

 

 22   make some changes in the consent form related to

 

 23   the issue of informing the patients about this

 

 24   result, and basically, what it says the study

 

 25   subjects shall be adult males who are 18 years of

                                                               108

 

  1   age or older.

 

  2             The first patient treated under this

 

  3   protocol was very shown by very sensitive

 

  4   techniques to have vector in his semen for as long

 

  5   as 10 weeks after treatment.  Although the vector

 

  6   was not found in the sperm fraction, the

 

  7   significance of this finding is unclear, and all

 

  8   patients are strongly urged to use barrier birth

 

  9   control devices, condoms, until the patient is

 

 10   informed that semen has been clear of vector for at

 

 11   least three months.

 

 12             The investigators will notify you when it

 

 13   is safe to stop barrier methods of birth control.

 

 14   The consequences of gene transfer, the germline

 

 15   cells are unknown, but could potentially result in

 

 16   serious birth defects or fetal death or other

 

 17   unanticipated health consequences, such as cancer,

 

 18   in the offspring due to the disruption of normal

 

 19   genes by the transferred DNA.  If you are

 

 20   considering having children in the future, it is

 

 21   recommended that you bank sperm before beginning

 

 22   the procedure to ensure a source of sperm that is

 

 23   free of contamination with the vector.

 

 24             The reason for storing semen is that it is

 

 25   possible that if the sperm cells do take up the

                                                               109

 

  1   vector during the procedure, it may or may not

 

  2   result in life-long changes to the sperm.  The

 

  3   investigators will provide you with information on

 

  4   sperm banking and this one is for Stanford at

 

  5   Stanford University or at your home institution.

 

  6   This opportunity will be provided to you at no

 

  7   additional expense.

 

  8             So the point here is that we urge the

 

  9   individuals to undergo a barrier contraception, we

 

 10   talk about the risk in this first patient, and the

 

 11   fact that we will sperm bank in case they are

 

 12   considering or uncertain about future childbearing.

 

 13             Now, because of this issue of finding, at

 

 14   least in the first patient, transient AAV vector

 

 15   sequences in the semen, we amended the plan to

 

 16   address this issue of inadvertent germline

 

 17   transmission, and the protocol was changed, so that

 

 18   semen collection was done as a baseline, and then

 

 19   at weeks 1, 8, 12, 16, or possible more.

 

 20             Now, the idea was, and the plan is, that

 

 21   beginning at 8 weeks, the sample is then

 

 22   fractionated and total semen and motile fractions

 

 23   are analyzed for vector genomes by PCR. If the

 

 24   8-week motile sperm fraction is negative, we would

 

 25   be allowed to proceed to the next dose cohort.  All

                                                               110

 

  1   subjects to practice barrier contraception until

 

  2   three consecutive monthly semen samples are

 

  3   negative.

 

  4             So, although we will test and fractionate

 

  5   through week 16, the question is we continue if

 

  6   there haven't been three successive negative semen

 

  7   samples

 

  8             [Slide.

 

  9             Subject 2 was a 48-year-old male with

 

 10   severe hemophilia B.  He had a bilateral knee

 

 11   replacement in 1999 and elbow replacement in 2001.

 

 12             He is HIV-positive and HCV-positive.  He

 

 13   underwent a liver biopsy and was shown to have

 

 14   minimal fibrosis and based on criteria in the

 

 15   protocol, was allowed to be included in the study.

 

 16             He had a non-Hodgkin's large cell lymphoma

 

 17   in 1986, was treated, had a relapse in 1996, and

 

 18   was treated and he is on medications for his HIV

 

 19             [Slide.

 

 20             The procedure was performed in January,

 

 21   the end of January of this year, received the same

 

 22   dose as the first patient.  No complications.  Went

 

 23   back after 7 days

 

 24             [Slide.

 

 25             Patient 2, like Patient 1, had totally

                                                               111

 

  1   normal LFTs, no elevations related to the vector

 

  2             [Slide.

 

  3             Renal function, not shown with the first

 

  4   patient, but were also normal in the second patient

 

  5             [Slide.

 

  6             Again, the CBC including the platelet

 

  7   counts were normal.  There was no elevation with

 

  8   vector administration

 

  9             [Slide.

 

 10             Now, with the second patient, again, we

 

 11   see no evidence of inhibitors, and we have also

 

 12   noticed that there is a question of whether there

 

 13   is any detectable factor IX in this patient.  The

 

 14   week 8 and week 12 samples were obtained at least

 

 15   14 days prior to factor IX administration, and

 

 16   there are some low levels of factor IX here

 

 17   detectable, but again it is unclear whether this is

 

 18   really and truly from gene transfer.  I just wanted

 

 19   to point out that this is the data to date.  So it

 

 20   is still questionable

 

 21             [Slide.

 

 22             Now, when we looked at his body fluids,

 

 23   the saliva was positive for a slightly longer

 

 24   period of time, up to one week.  His serum was also

 

 25   positive up to four weeks, which again was two

                                                               112

 

  1   weeks longer than the first patient.

 

  2             Unlike the first patient, we did see

 

  3   transient positivity in the urine, but only out

 

  4   until day 2, and he also has had some positive

 

  5   stool samples, as well

 

  6             [Slide.

 

  7             Now, this is where we are with the semen

 

  8   analysis for the vector DNA.  He has remained

 

  9   positive up through week 14, but let me talk about

 

 10   the total semen first.

 

 11             The total semen, the signal of the PCR has

 

 12   started to diminish, similarly to what we have seen

 

 13   in Patient 1.  If you remember Patient 1, he was

 

 14   persistently negative after week 12, and the week

 

 15   14 sample, which we just obtained this week,

 

 16   although it was positive, the signal appears to be

 

 17   weak, so it appears to be going down in

 

 18   concentration, although this is not an absolutely

 

 19   quantitative assay.

 

 20             Now according to the protocol, we were

 

 21   supposed to fractionate his week 8 sample into the

 

 22   fractions that I discussed earlier, to look at the

 

 23   motile sperm fraction, but it turns out that this

 

 24   individual has ejaculate volumes that are well

 

 25   below half a ml.  When the sample went to the lab,

                                                               113

 

  1   it has got to be fractionated within about 30

 

  2   minutes or so, and when they got the sample, the

 

  3   lab said, you know, based on our SOP that we have,

 

  4   and the one that is provided in the protocol, this

 

  5   volume is not adequate to fractionate, so it wasn't

 

  6   fractionated.

 

  7             Well, we went back, and after discussions

 

  8   with FDA and our colleagues, we realized that there

 

  9   are standard operating procedures in these clinical

 

 10   laboratories to fractionate low-volume ejaculates,

 

 11   and this then was attempted on the week 14 sample.

 

 12             But unfortunately, the DNA recovery from

 

 13   this week 14 sample was such that it would only be

 

 14   possible to run triplicate samples of 300 nanograms

 

 15   per ml, and based on our changes in the protocol,

 

 16   which we have just sent to the FDA, this would be a

 

 17   fractionated sample that we would not analyze.  So

 

 18   the fractionated sample with 300 nanograms in it

 

 19   was not analyzed by PCR.

 

 20             It has turned out that although it is

 

 21   simple in theory, it has been difficult, a little

 

 22   more difficult than we had anticipated doing these

 

 23   fractionation procedures and getting the kinds of

 

 24   DNA recoveries that one would want.

 

 25             This individual has supernormal sperm

                                                               114

 

  1   counts so although his volume is low, it appears

 

  2   that spermatogenesis in this individual appears to

 

  3   be normal because his counts are well above normal.

 

  4             It also turns out that there are lots of

 

  5   rules and regulations in the labs that do the

 

  6   fractionation.  In fact, we are learning that many

 

  7   of these labs are not allowed to fractionate

 

  8   HIV-positive samples, which has also led to some of

 

  9   the difficulty in getting these specimens

 

 10   fractionated at will.

 

 11             So based on this, we have added new

 

 12   exclusion criteria.  We realize that this

 

 13   individual has an issue with ejaculate volume, but

 

 14   with normal sperm counts, that is very, very rare

 

 15   and unusual, but because of this in this patient,

 

 16   we have added an additional exclusion criteria to a

 

 17   revised protocol.

 

 18             First of all, we state in there that an

 

 19   exclusion issue are related to patients who are

 

 20   unwilling to provide required semen samples, and

 

 21   patients that are unable to provide semen samples

 

 22   of adequate semen volume, which we define at 1 1/4

 

 23   ml sperm count, and we define the cutoff at 20 x

 

 24   106 sperm per ml, and with motility of greater than

 

 25   50 percent.  Again, this was based on the data we

                                                               115

 

  1   have obtained from this Patient No. 2.

 

  2             [Slide.

 

  3             So, in conclusion, I can say that Subjects

 

  4   1 and 2 have tolerated the procedure well, vector

 

  5   DNA is present transiently and total semen from

 

  6   Subject 1, not present in the motile sperm fraction

 

  7   at week 3, albeit the sample that was analyzed was

 

  8   220 nanograms, not the desired 1 microgram.

 

  9             We have much limited data in Subject 2

 

 10   although the signal is going down, we still haven't

 

 11   detected a sample that has been negative, and

 

 12   currently, based on what has been approved, that

 

 13   the enrollment of the subjects at the mid-dose

 

 14   proceeds only if Subject 2 shows absence of signal

 

 15   in the motile sperm fraction.

 

 16             So, in summary, what I would like to say

 

 17   is that clinical studies demonstrate safety and

 

 18   long-term efficacy of AAV factor IX in the liver in

 

 19   the large animal model of hemophilia.  We think

 

 20   that this is really the impetus to move forward.

 

 21             The initial clinical studies indicate that

 

 22   this gene transfer strategy can be safety

 

 23   translated into human subjects, and we strongly

 

 24   believe that the completion of the Phase I study is

 

 25   required for valid risk-benefit analysis of the

                                                               116

 

  1   strategy.

 

  2             We would like to present a proposal to you

 

  3   of what we would see as a reasonable route of

 

  4   moving forward, but before we do that, there will

 

  5   be two additional speakers who are going to present

 

  6   the preclinical data studies that have been done to

 

  7   try to address this issue, what has been done, the

 

  8   data to date, future studies in a number of

 

  9   different animal settings.

 

 10             Thank you.

 

 11             DR. SALOMON:  Thank you very much.

 

 12             We won't have any questions until after

 

 13   the second speaker.

 

 14             This second talk is from Linda Couto of

 

 15   Avigen entitled Safety Studies to Support

 

 16   Intrahepatic Delivery of AAV.

 

 17         Safety Studies to Support Intrahepatic Delivery

 

 18                              of AAV

 

 19                        Linda Couto, Ph.D.

 

 20             DR. COUTO:  I am going to describe a

 

 21   series of preclinical studies that were performed

 

 22   to evaluate the safety of delivering AAV to the

 

 23   hepatic artery

 

 24             [Slide.

 

 25             We have used five different species -

                                                               117

 

  1   mice, rats, dogs, rabbits, and monkeys to assess

 

  2   the toxicology and biodistribution, but today, I am

 

  3   going to limit my talk just to the biodistribution

 

  4   studies that are relevant to inadvertent germline

 

  5   transmission

 

  6             [Slide.

 

  7             I am going to summarize the studies in

 

  8   rats, dogs, and monkeys, and then Valder Arruda is

 

  9   going to present some more recent data in rabbits,

 

 10   which appear to be probably the best model for

 

 11   studying inadvertent germline transmission.

 

 12             However, before discussing the

 

 13   biodistribution data, I just want to point out that

 

 14   in all of these five species, we haven't seen any

 

 15   toxicology at doses up to 1 x 1013 vector genomes

 

 16   per kilogram, which is 50-fold higher than our

 

 17   starting clinical dose.

 

 18             This is the biodistribution study that was

 

 19   performed in rats.  In this study there were five

 

 20   groups of animals.  One group was treated with the

 

 21   excipient.  One group was treated with an AAV null

 

 22   vector, which does not contain a transgene.  Then,

 

 23   there were three groups of animals that were

 

 24   injected with increasing doses of an AAV factor IX

 

 25   vector from 1 x 1011 per kilogram to 1 x 1013 per

                                                               118

 

  1   kilogram.

 

  2             So what you can see is that at 50 days

 

  3   post-injection, we saw a good gene transfer to the

 

  4   liver, so at the low dose we were seeing about 1

 

  5   copy per 60 cells in the liver, and at the high

 

  6   dose we were seeing about 1 copy per 1 to 2 cells.

 

  7             At this time point, we also did see vector

 

  8   dissemination to the gonads at least in some of the

 

  9   animals. At the low dose we didn't see any

 

 10   dissemination, but at the high dose we saw about 1

 

 11   copy per 1,700 cells, so this was about 1,000-fold

 

 12   lower than the gene transfer we were seeing in the

 

 13   liver.

 

 14             At this time point, we were also seeing

 

 15   vector in the blood, however, by day 92

 

 16   post-injection, we no longer detected any sequences

 

 17   in the blood, and the level of gene transfer to the

 

 18   liver and the gonads had decreased.

 

 19             So, at the 92-day time point, we were

 

 20   seeing about 1 vector copy per 4 cells in the

 

 21   liver, and only about 1 copy per 4,000 cells in the

 

 22   gonads, but only in the highest dosed animals.

 

 23             [Slide.

 

 24             We also did a gonadal distribution study

 

 25   in dogs. In this study, three normal dogs were

                                                               119

 

  1   injected with AAV null vector at doses ranging from

 

  2   3.7 to 7 x 1012 vectors genomes per kilogram, and

 

  3   in this study, the vector was delivered using the

 

  4   method that we are using in the clinic.  So, a

 

  5   catheter was inserted into the femoral artery and

 

  6   then using fluoroscopic guidance was advanced to

 

  7   the hepatic artery where the vector was infused.

 

  8   Then, semen samples were collected at various times

 

  9   post-injection.

 

 10             In addition to the semen samples, we also

 

 11   looked at toxicology parameters and also looked at

 

 12   gonadal tissue at the time of sacrifice.

 

 13             In this experiment, we used the AAV null

 

 14   vector, which contains a promotor list transgene.

 

 15   The reason for using this was just to prevent any

 

 16   CTL response, eliminating the transduced cells.

 

 17             [Slide.

 

 18             So, these are the results of PCR analysis

 

 19   of the dog semen.  The lower panel here represents

 

 20   an ethidium bromide stain gel of the PCR products,

 

 21   and over here on the right you can see that the

 

 22   level of sensitivity is about 100 copies per

 

 23   microgram.  At this level of sensitivity, there is

 

 24   no evidence of vector sequences in any of the dogs

 

 25   at any of the time points out to day 90.

                                                               120

 

  1             We also did a southern blot of this gel,

 

  2   and increased the sensitivity down to 10 copies per

 

  3   microgram, which is 1 copy per 30,000 haploid

 

  4   genomes, and again we are not seeing any detection

 

  5   of sequences in the semen of these dogs.

 

  6             We also performed PCR on gonadal tissue

 

  7   and again we didn't see any evidence of

 

  8   dissemination to the gonads in these animals.

 

  9             [Slide.

 

 10             More recently we have looked at toxicology

 

 11   and biodistribution in the non-human primates, and

 

 12   in this study we have treated 6 cynomolgus monkeys,

 

 13   2 animals were treated with the excipient, 2

 

 14   animals got a factor IX vector at a dose of 7 x

 

 15   1012 into the hepatic artery, and another 2 animals

 

 16   received the same dose of vector via the portal

 

 17   vein.

 

 18             This study was designed as a toxicology

 

 19   study, but we tried to get some limited

 

 20   biodistribution study by harvesting the liver and

 

 21   the gonads and doing PCR analysis when the animals

 

 22   were sacrificed at day 135

 

 23             [Slide.

 

 24             This is the results of that study.  What

 

 25   you can is that in 2 of the 4 injected animals, we

                                                               121

 

  1   saw gene transfer to the liver.  It is not really

 

  2   clear why only 2 of the 4 animals worked, but what

 

  3   we can say is that in those 2 animals, gene

 

  4   transfer was relatively efficient, so 1 of the

 

  5   animals that got the vector via hepatic artery, we

 

  6   saw vector genomes at about 1 vector sequence per 3

 

  7   cells, and in the other animal we saw 1 to 2 vector

 

  8   sequences per cell.

 

  9             What we also saw was, you know, despite

 

 10   this high level of gene transfer to the liver, we

 

 11   did not detect any sequences in the gonads, and the

 

 12   level of sensitivity in this particular PCR assay

 

 13   was 1 copy per 40,000 diploid cells.

 

 14             [Slide.

 

 15             We also took advantage of this non-human

 

 16   primate testes to ask the question whether any of

 

 17   the cells in the testes had the receptor for AAV,

 

 18   which Jude Samulski's group had previously reported

 

 19   to be heparan sulfate proteoglycan.

 

 20             So what we are looking at here is a

 

 21   stained section of the non-human private testes,

 

 22   and the heparan sulfate proteoglycan is stained and

 

 23   nuclei are stained blue with DAPI.  What you can

 

 24   clearly see is that the receptor, heparan sulfate

 

 25   proteoglycan is present in the basement membranes

                                                               122

 

  1   surrounding the seminiferous tubules, but none of

 

  2   the spermatogenic cells are staining positive to

 

  3   HSPG, suggesting that these cells would be

 

  4   non-permissive for AAV infection.

 

  5             What I have just shown you has

 

  6   demonstrated that at least in some animal species,

 

  7   we do see dissemination of AAV vector to gonads,

 

  8   and although we didn't see dissemination of vector

 

  9   to the semen in dogs, Valder Arruda will show some

 

 10   data demonstrating that we do get vector

 

 11   dissemination to semen of rabbits, and Mark Kay

 

 12   also just presented our data from the clinical

 

 13   trial demonstrating that we are seeing vector

 

 14   dissemination in human patients.

 

 15             So there certainly is the risk for both

 

 16   horizontal and vertical germline transmission.

 

 17   What I would like to present now are some studies

 

 18   that we have been working on and also some

 

 19   published work that addresses the risk of AAV

 

 20   dissemination in both horizontal and vertical

 

 21   transmission.

 

 22             The first study is a paper from Philip

 

 23   Moray's [ph] lab looking at vector shedding in a

 

 24   number of biological fluids, and then I will

 

 25   present the development of a cell-based infectivity

                                                               123

 

  1   assay, so that we can now begin to look at

 

  2   biological activity of AAV in semen samples.

 

  3             Then, I will also address the issue of

 

  4   vertical transmission by describing an experiment

 

  5   that we have initiated in collaboration with Dr.

 

  6   Jon Gordon to see whether AAV can infect murine

 

  7   sperm cells

 

  8             [Slide.

 

  9             So, the study that was published in the

 

 10   Journal of Molecular Therapy last December from

 

 11   Philip Moray's group is shown on this slide.  They

 

 12   injected 8 monkeys with an AAV-Epo vector at doses

 

 13   ranging from 5 x 108 to 1 x 1010 infectious units

 

 14   per kilogram, and their vector had a particle

 

 15   infectivity ratio of about 100.

 

 16             This vector was inject intramuscularly and

 

 17   then at various time points post-injection, a

 

 18   number of body fluids, such as serum, feces, urine,

 

 19   saliva, lacrimal and nasal, but not semen, were

 

 20   evaluated both by PCR for vector sequences and

 

 21   using a replication center assay to look for

 

 22   biologically active AAV.

 

 23             In addition, they looked in the peripheral

 

 24   blood mononuclear cells for vector sequences

 

 25             [Slide.

                                                               124

 

  1             This is a figure from their paper, which

 

  2   shows the results of the replication center assay.

 

  3   In this assay, cells are coinfected with AAV and

 

  4   the helper virus for AAD, adenovirus.  Following

 

  5   incubation for several days, the cells are

 

  6   harvested and filtered onto a nylon membrane and

 

  7   then harbodized to a radioactive probe.

 

  8             So what we are looking here is the ability

 

  9   of AAV in the presence of its helper virus, to both

 

 10   infect and replicate in this cell.

 

 11             The panel on the lefthand slide shows the

 

 12   controls.  This is AAV that has been spiked just

 

 13   into media, and you can detect 1,000 down to 1

 

 14   infectious unit.  However, when the AAV is spiked

 

 15   into either serum, feces, urine, the level of

 

 16   sensitivity in the assay decreased about 10- to

 

 17   100-fold.

 

 18             On the righthand portion of the slide is

 

 19   the results of testing the serum from two of the

 

 20   monkeys, and you can see that 30 minutes

 

 21   post-injection there is evidence of biologically

 

 22   active AAV in the serum, and you can also detect

 

 23   some activity one day and two days post-injection,

 

 24   but by five days post-injection, there is no longer

 

 25   any biological activity in the serum

                                                               125

 

  1             [Slide.

 

  2             This slide just summarizes the results

 

  3   from all 8 monkeys.  The red bars indicate a

 

  4   30-minute time point.  The yellow bars represent a

 

  5   one-day time point, and the blue bars represent the

 

  6   two-day time point.

 

  7             Basically, you can see that in all of the

 

  8   animals, by three to four days post-injection,

 

  9   there is no longer any biologically active AAV in

 

 10   the serum.  They also tested other body fluids, but

 

 11   they only found activity in the serum.

 

 12             [Slide.

 

 13             Finally, they also looked for AAV

 

 14   sequences in peripheral blood mononuclear cells,

 

 15   and surprisingly, they were able to detect this

 

 16   signal out to 10 to 15 months post-injection.  So

 

 17   vector sequences can be persistently detected in

 

 18   the peripheral blood mononuclear cells

 

 19             [Slide.

 

 20             So, just to summarize their data, AAV

 

 21   vector sequences are detected in all body fluids by

 

 22   PCR for approximately 6 days.  I didn't show you

 

 23   this, but they did also demonstrate that the PCR

 

 24   signal is due to packaged AAV sequences rather than

 

 25   free DNA.

                                                               126

 

  1             They also demonstrated that biologically

 

  2   active AAV was detected in serum for 48 to 72

 

  3   hours, suggesting that the risk of horizontal

 

  4   transmission is limited to a short period of time

 

  5   post-injection.

 

  6             Finally, they also concluded that vector

 

  7   sequences can be detected in the PBMCs for as long

 

  8   as 10 to 15 months following an intramuscular

 

  9   administration

 

 10             [Slide.

 

 11             After discussions with the FDA and also

 

 12   following the December RAC meeting, it became clear

 

 13   that it was important to develop an assay, so that

 

 14   we could detect or try to detect biologically

 

 15   active AAV in semen samples, so this just

 

 16   schematically illustrates the assay that we have

 

 17   been developing.

 

 18             Basically, it is similar to the

 

 19   replication center assay that I just described,

 

 20   however, the readout of replication in this case

 

 21   relies on a quantitative PCR assay rather than a

 

 22   hybridization.

 

 23             So basically HeLa cells which express the

 

 24   AAR Rep and Cap genes are incubated in the presence

 

 25   of 100 microliters of semen with increasing doses

                                                               127

 

  1   of an AAV factor IX vector and with adenovirus.

 

  2             Then, 72 post-injection the cells are

 

  3   harvested, DNA extracted, and subjected to

 

  4   quantitative PCR

 

  5             [Slide.

 

  6             This just depicts a typical result from

 

  7   this assay where the intensity of the red color is

 

  8   meant to represent the amount of PCR amplification

 

  9   detected in the well.  So in the case of just

 

 10   spiking vector into media, you can see that we can

 

 11   detect as few as 10 to 50 vector genomes per well,

 

 12   however, when the AAV is spiked into semen, the

 

 13   level of sensitivity of the assay decreases about

 

 14   10-fold, so that now the lowest dose that results

 

 15   in an amplification signal is 500 vector genomes

 

 16   per well per 100 microliters or 5,000 vector

 

 17   genomes per ml of semen.

 

 18             So what we intend to do with patient and

 

 19   animal semen is two different assays.  First of

 

 20   all, we will simply extract DNA from the sample and

 

 21   do quantitative PCR to determine the number of

 

 22   vector genome per ml, and in addition, we will take

 

 23   a portion of the sample, run the infectivity assay

 

 24   to determine the infectious units per ml of semen,

 

 25   and then we will be able to monitor and compare the

                                                               128

 

  1   kinetics of clearance of both the physical and the

 

  2   infectious particles.

 

  3             [Slide.

 

  4             To address the issue of vertical

 

  5   transmission, as I mentioned, we have initiated a

 

  6   collaboration with Dr. Gordon.  In this case, what

 

  7   we propose to do is expose murine sperm cells to

 

  8   very high doses of AAV.

 

  9             We feel this is a very rigorous test of

 

 10   whether AAV can actually transduce sperm although a

 

 11   very non-natural situation, but this slide just

 

 12   illustrates the steps that are being taken.

 

 13             First of all, murine sperm are isolated

 

 14   and then exposed to an AAV factor IX vector at an

 

 15   MOI of about 1,000. The sperm are used in an in

 

 16   vitro fertilization, and then the fertilized

 

 17   oocytes are implanted into pseudopregnant females.

 

 18             The fetuses will be harvested 10 to 12

 

 19   days post-gestation, DNA will be extracted and

 

 20   subjected to southern blot analysis, and what we

 

 21   will be looking for is single copy AAV factor IX

 

 22   sequences in genomic DNA, and if we are able to

 

 23   detect one copy per diploid genome, that will be

 

 24   used as evidence of vertical germline transmission

 

 25             [Slide.

                                                               129

 

  1             Just to summarize what I have just been

 

  2   discussing, first of all, the extent of vector

 

  3   dissemination to animal tissues correlates with

 

  4   dose and decreases with time.

 

  5             Following intrahepatic delivery of AAV,

 

  6   vector is either absent from gonadal tissue, which

 

  7   was the case in the dogs and the non-human

 

  8   primates, or present at levels 1,000-fold lower

 

  9   than liver, as in the case with the rats, and in

 

 10   this case it clears with time.

 

 11             The studies in the non-human primate

 

 12   suggest that AAV in serum is not infectious after

 

 13   72 hours, but vector signal can be detected in

 

 14   PMBCs for up to 10 months after an intramuscular

 

 15   administration.

 

 16             The AAV receptor, HSPG, is not expressed

 

 17   on non-human primate spermatogonial cells,

 

 18   suggesting that these cells may not be infected by

 

 19   AAV.

 

 20             Finally, we believe that the data is

 

 21   consistent with hematogenous dissemination of

 

 22   vector to gonads with clearance over time.

 

 23             [Slide.

 

 24             So the issues that we are continuing to

 

 25   address are, first of all, is there infectious

                                                               130

 

  1   virus in semen, and as I mentioned, we have

 

  2   developed an infectivity assay which we intend to

 

  3   use both on humans and animal semen samples.

 

  4             Another question is are the vector

 

  5   sequences in semen associated with the motile

 

  6   sperm, other cells, or the seminal fluid, and as

 

  7   Mark Kay mentioned, we have begun fractionating the

 

  8   human semen samples, and we have also begun doing

 

  9   this with rabbit samples, as you will hear in the

 

 10   next presentation.

 

 11             Another question that we are trying to

 

 12   answer is can AAV infect mature sperm cells, and we

 

 13   have initiated a study using IVF to demonstrate or

 

 14   not demonstrate this in animal models.

 

 15             I will stop there.

 

 16             DR. SALOMON:  Thank you very much, Linda.

 

 17             I was thinking of doing the next talk and

 

 18   then discussing all three of the talks as a group.

 

 19   Would that be okay with everybody?  I got the

 

 20   feeling Avigen was kind of packaging this as a

 

 21   group.

 

 22          Assessing the Risk of Germline Transmission of

 

 23                      AAV in a Rabbit Model

 

 24                       Valder Arruda, M.D.

 

 25             DR. ARRUDA:  I would like to talk now

                                                               131

 

  1   about preclinical studies, address the issue of

 

  2   biodistribution following injection of an AAV

 

  3   vector into rabbits as a model to analyze the

 

  4   inadvertent germline transmission

 

  5             [Slide.

 

  6             Animals in these studies were injected

 

  7   with the same vector to be used in clinical trial.

 

  8   The doses ranged from 1 x 1011 to  1 x 1013 vg/kg.

 

  9             Semen is collected at serial time points

 

 10   after injections, we intend to fractionate the

 

 11   semen, analyze the total semen and fractions by PCR

 

 12   developed by the human specimens, as Dr. Kay said

 

 13   before.

 

 14             [Slide.

 

 15             Although when we talking collection of

 

 16   semen for rabbits, I like just to mention that the

 

 17   method we are using is the natural method, using an

 

 18   artificial vagina that has an advantage, it

 

 19   provides an uncontaminated sample for each animal.

 

 20             However, this method has a disadvantage.

 

 21   The animal requires to be trained to do this

 

 22   procedure, and this has some implication, as you

 

 23   will hear later on during my talk.

 

 24             [Slide.

 

 25             When we talk about semen, we talk actually

                                                               132

 

  1   a marker, what happens in both genital and urinary

 

  2   tract.  Actually, 70 percent of what we call

 

  3   ejaculate comes from the seminal vesicle, 20

 

  4   percent from the prostate gland, and only 5 percent

 

  5   from tests and ducts, and a small portion from

 

  6   accessory glands.

 

  7             Also, although spermatozoa is the main

 

  8   cellular component of semen, there are other cells

 

  9   that is special for our case is really important to

 

 10   know, and these cells are present normal in fertile

 

 11   donors like leucocytes, epithelial cells, immature

 

 12   germline cells, and enucleated cytoplasm, and this

 

 13   can be around the cells.

 

 14             Also, for rabbits, are commonly found

 

 15   debris in gel.  Gel especially comes from ejaculate

 

 16   of young animals. Together, this explains the

 

 17   reasons why we would like to fractionate the total

 

 18   semen before we save it in aliquot to analyze the

 

 19   total semen, we go for fractionation to obtain the

 

 20   motile sperm and seminal fluid and the normal type

 

 21             [Slide.

 

 22             What we have up to now is actually 3

 

 23   cohort of animals that has been injected in total

 

 24   27 rabbits.

 

 25             The first cohort consists of 12 animals. 

                                                               133

 

  1   They were 5 months old at the time of injection.

 

  2   Although sexually mature, these animals were not

 

  3   experienced in semen collection, so we are

 

  4   restricted to analyze only later time points.

 

  5             It was necessary to go back and look for

 

  6   experienced animals.  At this point, we could get 3

 

  7   animals. They were 18 months old and semen was

 

  8   collected weekly.

 

  9             More recently, we have a group of 12

 

 10   rabbits, median age are around 20 months, and these

 

 11   we obtained from retired breeders.

 

 12             What I am going to start to show to you is

 

 13   the result of the 10 in the second cohort followed

 

 14   by the third cohort, and only the later time point

 

 15   for the very first group we inject.

 

 16             [Slide.

 

 17             For all these animals, serum sample was

 

 18   collected 24 hours injections for the 8 and up to 7

 

 19   days.  For all of them, we have augmented vector

 

 20   sequences by the PCR.

 

 21             Typically, each sample that has been

 

 22   analyzed for each animal are represented here.  We

 

 23   run assay in triplicate with just semen and one

 

 24   spiked experiment to exclude PCR inhibition.

 

 25             As you can see here, this is the first

                                                               134

 

  1   experienced rabbits that we inject.  At the low

 

  2   dose, no signal was detected, in the triplicate

 

  3   experiment, one single band out of triplicate in

 

  4   the mid-dose cohort, and the higher dosed animal,

 

  5   three out of three.  This higher dose, although it

 

  6   is not a qualitative assay, is close to 10 cups of

 

  7   vector plasmid.

 

  8             [Slide.

 

  9             So this table shows the serial time points

 

 10   from the three experiments, rabbits ranged for 7

 

 11   days following injection up to 115 days.  Each

 

 12   assay, as you can see here, was run in triplicate

 

 13   in the yellow line, the semen that was detected as

 

 14   a positive signal.  For the lower dose animal, we

 

 15   never detected any signal during this period.  For

 

 16   the mid-dose animal, signal has been detected up to

 

 17   day 22, for the higher dose, up to day 44

 

 18             [Slide.

 

 19             We attempt to fractionate the rabbit semen

 

 20   and the optimal fractionation actually depend on

 

 21   the size and shape of the sperm, as well as the pH

 

 22   of the semen.  At the very first time point, we use

 

 23   parameters worked out for human semen, and actually

 

 24   reagents for human semen, and when you look under

 

 25   the microscope, we saw a lot of agglutinations,

                                                               135

 

  1   cell debris.  You can see that even after fall in

 

  2   fractionation, you concentrate fraction of motile

 

  3   sperm, but it still has a lot of debris.

 

  4             [Slide.

 

  5             When one compares germ cells for human and

 

  6   rabbits, they are different, so the volume of

 

  7   ejaculate is smaller in rabbits, and we anticipate

 

  8   that this would be a problem for fractionation as

 

  9   for humans, although the density of the sperm in

 

 10   rabbits is higher, the characteristics of this

 

 11   sperm is different.  They are pretty much the same

 

 12   total length, but the distribution is different.

 

 13             [Slide.

 

 14             So, we talked with people at this company,

 

 15   Nidacon, and they actually in-house some reagents

 

 16   to use for rabbits.  We didn't use if that was

 

 17   really helpful or not, so we just took a chance and

 

 18   we used the reagents that have been developed for

 

 19   rabbits.  Not only the grade had changed, but also

 

 20   the centrifugation conditions changed.

 

 21             After that, we improved the fractionation,

 

 22   but occasionally, we still detect 1 or 2 percent of

 

 23   cells other than motile sperm.

 

 24             [Slide.

 

 25             So these results are from the first three

                                                               136

 

  1   experienced animals.  The top animal is what I

 

  2   showed before.  So these are the points that we are

 

  3   able to fractionate the semen in these animals.

 

  4             As you can see, the motile sperm analysis

 

  5   shows a positive signal in the mid-dose animal.

 

  6   The high-dose animal, at this point, the volume was

 

  7   not enough to allow fractionation.  It was just 200

 

  8   microliters.  So, we saved it only for the total

 

  9   semen analysis.

 

 10             After day 7, the second time point was day

 

 11   22, and all the animals turns out to be negative,

 

 12   and up to here, we use the human protocol, and

 

 13   after this, the rabbit protocol, but after that, as

 

 14   you can see, no signal has been identified by the

 

 15   same PCR reaction.

 

 16             For the normal type sperm, seminal fluids,

 

 17   again, we have seen signal positive for the

 

 18   mid-dose group and from the higher dose group, and

 

 19   again, for low-dose animal, we have never been able

 

 20   to detect

 

 21             [Slide.

 

 22             Now, I will show the third cohort.  these

 

 23   are 12 rabbits, experience rabbits, and we have

 

 24   only two time points.  It is important here that we

 

 25   have time point 7 - 15 days, 15 days we didn't have

                                                               137

 

  1   for the very first group, we just skipped to day

 

  2   22nd.

 

  3             This is the total semen.  You can see that

 

  4   three animals on the low dose cohort was positive

 

  5   at 7 days, but became negative at 15 days.  For the

 

  6   mid-dose and the high-dose, these animals are still

 

  7   positive although decrease in numbers at the normal

 

  8   type sperm fraction, also we can see that the

 

  9   higher the dose, the higher the number of animals

 

 10   positive up to this early time point.

 

 11             The motile sperm analysis, we have not

 

 12   observed any positive signal for the lower dose

 

 13   animal, a positive signal for the mid-dose and

 

 14   high-dose, and again I would say that at this

 

 15   point, the positive didn't change much from 7 to 15

 

 16   days.  We still collect today, actually, the day

 

 17   21.

 

 18             The last group, these are the first cohort

 

 19   that we inject that we inexperienced at that time,

 

 20   so it took us like a couple weeks to train these

 

 21   animals and now they are able to provide the

 

 22   specimen.

 

 23             So we have here, we collect semen for

 

 24   groups that were injected a week apart.  That is

 

 25   why we have this range of days, from the low, mid,

                                                               138

 

  1   and high dose, they are persistent negatively until

 

  2   day 132.

 

  3             It is interesting as Dr. Couto showed

 

  4   before, in non-human primates, one can detect

 

  5   peripheral blood mononuclear blood cells positive

 

  6   at late time points following AAV injection.  Here,

 

  7   we also have been able to detect that these

 

  8   animals, they present positive signal in their

 

  9   peripheral white blood cells, and the top panel

 

 10   shows, at the same time, which corresponds to three

 

 11   months following injection, the total semen are

 

 12   negative.

 

 13             I am not going to go into detail into the

 

 14   rabbit experiment, this is just to represent a

 

 15   schematic, a very simplistic overview to say that

 

 16   these are numbers of days that get usually a

 

 17   spermatogen cycle in rabbits takes up to 42 days.

 

 18             Initially, the stem cell, it is outside

 

 19   the protected area, so outside the blood-testis

 

 20   barrier.  After day 16, cross the blood barrier,

 

 21   came to spermatocytes, and takes up to 10 days from

 

 22   the mature cells, spermatozoa, to get to the semen.

 

 23             So, you assume that the stem cell has been

 

 24   exposed to a vector at day zero.  The first time

 

 25   point that one animal should show up a positive

                                                               139

 

  1   signal in the semen started at day 52, maybe with a

 

  2   peak at day 58, and after that, you have the

 

  3   steady-state signal.

 

  4             If you put back the three cohorts of

 

  5   animals we inject so far, we can tell the

 

  6   following.  We detect PCR-positive signal in total

 

  7   semen or some fractions, 7, 15, 20, and 44 days.

 

  8   The PCR becomes negative, the old sample tests

 

  9   after day 50.  This is for the first three cohorts

 

 10   of animals, and this is for the very first 12

 

 11   animals that we start collecting at day 86 up to

 

 12   day 1 to 132.

 

 13             If we consider that the rabbits

 

 14   spermatogenesis single sites 44, 42, 46 days, at

 

 15   this time point that we analyze, we will be able to

 

 16   analyze at least two to three sites of the total

 

 17   rabbit spermatogenesis.

 

 18             Although it doesn't look like we are

 

 19   transducing any immature or stem cell at this point

 

 20   following only two or three sites of

 

 21   spermatogenesis, there has been talk before here

 

 22   was that possibility that actually the vector cross

 

 23   the basal compartment, cross the blood-testis

 

 24   barrier, and gets into more mature cells at this

 

 25   point.

                                                               140

 

  1             I even should skip this, but I will try to

 

  2   do what has been said before that may not work, and

 

  3   didn't work, that is was put multi-sperm of these

 

  4   rabbits in culture.  This is just to show -- I hope

 

  5   you can appreciate these are spermatozoas, and

 

  6   these we still found some cells into the motile

 

  7   sperm fraction, and unfortunately, by this computer

 

  8   thing, we cannot make the picture come out.

 

  9             What we did, we exposed these cells to

 

 10   AAV2 under a CMV control expressing a GFP.  The MOI

 

 11   used a range from 1 to 5,000, and the committee has

 

 12   a cut that we provide, shows that only that cell

 

 13   that I identify here, it looks like a bean or

 

 14   something like that, actually turns out to be

 

 15   positive for GFP.  Any other, the motile cells were

 

 16   positive.

 

 17             So, initially, for the muscle trial, we

 

 18   performed pretty much a similar series of

 

 19   experiments, used the same model, the rabbit, and I

 

 20   would just like to summarize this.  This actually

 

 21   has been published in 2001, and what we are able to

 

 22   identify following intramuscular injection of AAV2

 

 23   into rabbits was the following.

 

 24             We performed a series of IF staining and

 

 25   FISH analysis shows that we can detect signal from

                                                               141

 

  1   the vector, and this is localized in the vessel

 

  2   wall and the testicular basement membrane, which

 

  3   are rich structures for heparan sulfate

 

  4   proteoglycan, which there is no receptor for AAV

 

  5   serotype 2.

 

  6             The detectable signal especially in the

 

  7   gonads disappears with time.  It is important to

 

  8   remember that in this cohort of rabbits, no semen

 

  9   signal was ever identified, and also into the

 

 10   gonads, we neither detected any intracellular

 

 11   signal when you analyze animals following 7, 36,

 

 12   and 90 days.

 

 13             This is just to represent what we believe

 

 14   that the signal, this is IF staining, what you call

 

 15   localization for the AAV capsid and for heparan

 

 16   sulfate proteoglycan on the vessel wall in the

 

 17   testis basement membrane.

 

 18             So, in the last experiment that I would

 

 19   like to show is attempt to transduce not mature

 

 20   spermatozoa, but immature spermatozoa.  In this we

 

 21   have murine cells in culture in which murine

 

 22   spermatogonia and Sertoli cells were co-cultured.

 

 23             We transduced again with AAV2 under

 

 24   control of the CMV promotor expressing lacZ at the

 

 25   MOI 5000, and we stain for x-gal.  Here, it showed

                                                               142

 

  1   the signal.  Just before, I should say, that we

 

  2   identified the spermatogonia by immunostaining with

 

  3   a monoclonal antibodies to germ cell nuclei

 

  4   antigen.

 

  5             This is the result.  At the bottom is the

 

  6   mouse spermatogonia and Sertoli cells that give

 

  7   this kind of reddish signal.  In contrast, if you

 

  8   take the same transduced model, the fibroblasts or

 

  9   human [inaudible] it turns blue.

 

 10             I would like to conclude that intravenous

 

 11   administration of the dose of AAV up to 1 x 1013 in

 

 12   rabbits results in transient detectable signal in

 

 13   semen in a dose-dependent manner.

 

 14             PRC positivity of the semen persists up to

 

 15   day 44 in that cohort, that we have follow-up for

 

 16   almost 100 days revealed no positive signal, which

 

 17   is a duration of 2 or 3 times of the rabbit

 

 18   spermatogenesis.

 

 19             Vector signal can be detected in

 

 20   peripheral mononuclear blood cells for at least

 

 21   three months in rabbits in contrast to non-human

 

 22   primates, we know that this can go up to 10 months,

 

 23   but the vector is not biologically active after day

 

 24   7.

 

 25             In ongoing experiments, you can predict

                                                               143

 

  1   that we will continue follow up with kinetic

 

  2   clearance, determination of anatomic localization

 

  3   of signal as a function of the vector dose

 

  4   following intravascular injection.

 

  5             To determine whether AAV infectivity is

 

  6   detected in rabbit semen, we are followed by the

 

  7   experiments that Dr. Couto has before.  As well, we

 

  8   would like to determine whether receptor for AAV2

 

  9   is present in mice, rabbit, and human spermatozoa.

 

 10   That could give us some idea.

 

 11             I will stop here.

 

 12             DR. SALOMON:  I want to make sure we all

 

 13   understand where we are going.  What we are going

 

 14   to do now is have a discussion of the three talks

 

 15   that came, followed by people who have been invited

 

 16   to speak in the public hearing.

 

 17             We had talked about moving that out of

 

 18   order, but I am told that is not proper, but to

 

 19   reassure everybody that we will discuss the

 

 20   questions to the committee after that, so that

 

 21   everything will be on the table before we get to

 

 22   the questions.

 

 23             I think there are a number of interesting

 

 24   issues raised by the these three presentations, and

 

 25   I would like to put those open for some discussion.

                                                               144

 

  1             Dr. Dym.

 

  2                               Q&A

 

  3             DR. DYM:  I had a question for Dr. Couto,

 

  4   please, just a clarification, and maybe I didn't

 

  5   understand some things, but when you showed very

 

  6   elegantly that the receptor for AAV is around the

 

  7   seminiferous tubule and in the interstitial spaces,

 

  8   not inside the tubule, but then you didn't show AAV

 

  9   in the gonads.

 

 10             Isn't there a discrepancy there?

 

 11   Shouldn't it show up in gonad if the receptor is

 

 12   there, or did I miss something?

 

 13             DR. COUTO:  That particular section was an

 

 14   animal that was not even injected with an AAV

 

 15   vector, so we were just strictly looking at to tell

 

 16   whether the receptor for AAV is even present in a

 

 17   non-human primate testis.

 

 18             DR. DYM:  But in your other monkey tissue,

 

 19   didn't you say it is not detectable in testis?

 

 20             DR. COUTO:  The AAV sequences are not

 

 21   detectable in the gonadal tissue, correct, by PCR.

 

 22             DR. DYM:  So, wouldn't they be there,

 

 23   because the receptor is there?  I am missing

 

 24   something.

 

 25             DR. HIGH:  Can I clarify that question? 

                                                               145

 

  1   So, the answer to your very perceptive question, if

 

  2   you look in the Molecular Therapy paper, there is

 

  3   actually a FISH analysis of a rabbit testis from an

 

  4   animal sacrificed at day 7, after injection with

 

  5   AAV, and in that, you can see tracking in the same

 

  6   location that Dr. Couto showed in the non-human

 

  7   primate testis.

 

  8             You can see AAV vector detected by FISH

 

  9   analysis in the same location along the testicular

 

 10   basement membrane and actually around the vessel

 

 11   wall, as well.  You can detect that at day 7, but

 

 12   by longer time points, which were presented in

 

 13   several of the studies that Dr. Couto did, both in

 

 14   rabbits and in other species, as well, if you look

 

 15   at later time points like 50 days after or 100 days

 

 16   or 135 days, you don't see AAV vector any longer in

 

 17   the gonadal tissue.

 

 18             So, your point is correct, and if you look

 

 19   early on, you can see that, and that has been

 

 20   published in that Molecular Therapy study or day 7,

 

 21   but at later time points you don't see it.

 

 22             DR. SALOMON:  I have a couple questions.

 

 23   Going back to the very beginning, I posed a

 

 24   question about if sperm were not transcriptionally

 

 25   active, then, how do you interpret an experiment

                                                               146

 

  1   where you put in a CMV-GFP vector?

 

  2             DR. ARRUDA:  I don't think that is the

 

  3   ideal experiment.  We just want to see if one could

 

  4   transduce motile sperm in culture.  There are some

 

  5   people that say they can, in fact, transduce some

 

  6   mature spermatozoa using more aggressive ways.  We

 

  7   do not expect anything else.  It wasn't a surprise

 

  8   that the results were negative, but I think the

 

  9   best way to answer your question is to perform an

 

 10   experiment that Dr. Couto is doing with transducer

 

 11   cells in culture, and then you do in vitro

 

 12   fertilization and see the outcome.

 

 13             DR. SALOMON:  I certainly don't think that

 

 14   the evidence that you didn't get GFP expression

 

 15   really addressed anything.

 

 16             DR. ARRUDA:  I agree.

 

 17             DR. SALOMON:  If it had been positive, I

 

 18   agree it would have been important, but I don't

 

 19   know what is the point in showing it as negative.

 

 20             DR. ARRUDA:  I agree with that, and also

 

 21   it has been published that one can detect lacZ in

 

 22   this spermatozoa.

 

 23             DR. SALOMON:  What I would like to hear

 

 24   some discussion of is whether the experiment that

 

 25   Dr. Couto presented, and I guess that is going to

                                                               147

 

  1   be done with you, Jon, is the best study.

 

  2             I have some concerns about that.  It is a

 

  3   very good study.  It seems to me that it is really

 

  4   almost going over the top, which you said yourself,

 

  5   Jon, was what you should do.  So I would like to

 

  6   hear your comment on that as a point of discussion.

 

  7             It seems to me you have a reagent,

 

  8   however, that would also be extremely useful, and

 

  9   that would be to take your AAV-CMV promoter GFP and

 

 10   put it into the rabbit, and then actually trace GFP

 

 11   expression in different compartments particularly

 

 12   in this case, of course, in the spermatogonia, I

 

 13   mean so you could do it at different -- I don't

 

 14   need to tell you all the different variations of

 

 15   that, but that seems to me to be the most

 

 16   physiologic experiment.

 

 17             DR. GORDON:  I want to make a brief

 

 18   comment on that.  It is no surprise that sperm will

 

 19   not express genes put into them, but that doesn't

 

 20   mean that genes aren't in there, and couldn't be

 

 21   expressed late, just to reemphasize the strategy of

 

 22   doing this IVF.

 

 23             The other comment i would make is if there

 

 24   were AAV-CMV lacZ, I haven't looked for GFP in

 

 25   embryos, although I am sure it can be done, but if

                                                               148

 

  1   there were lacZ vectors, where I know I can look,

 

  2   you could look at thousands of cells in a very

 

  3   short time after exposing sperm to such a vector,

 

  4   and just simply stainings on an intact embryo.  We

 

  5   did that for adenovirus, it worked really well, and

 

  6   that would be a very nice protection against

 

  7   contamination when one harvests fetuses and the

 

  8   strategy that we are taking, which is of major

 

  9   concern to us, and which has been discussed amongst

 

 10   us over the last few weeks.

 

 11             DR. COUTO:  There is another experiment

 

 12   that we have thought of doing, and it is based on

 

 13   an experiment that Bob Braun's lab has done with

 

 14   adenovirus, where they had an adenovirus that had

 

 15   an expression cassette that has a protamine

 

 16   promoter hooked up to a lacZ vector.

 

 17             In that case, they are doing a natural

 

 18   route of administration, and then looking to see

 

 19   whether all of the progenitor spermatogonia,

 

 20   spermatocytes, et cetera, in an entire seminiferous

 

 21   tubule turn blue over the course of time.  That is

 

 22   another experiment that would not only look at the

 

 23   mature sperm, but also the immature sperm.

 

 24             DR. SALOMON:  The idea there is to use the

 

 25   protamine promoter as kind of a tissue-specific

                                                               149

 

  1   promoter, so that is even cooler, as would say in

 

  2   California.

 

  3             Jon, the question that I had for you was

 

  4   the experiment that they are talking about where

 

  5   you essentially culture the sperm with 1,000 MOI

 

  6   and then you go and do IBF. Isn't that just going

 

  7   to have a bunch of DNA coating the sperm?  Don't we

 

  8   already know the results of this experiment before

 

  9   they do it?

 

 10             DR. GORDON:  Meaning you think it would be

 

 11   positive.  Well, I can just say that we did that

 

 12   with adenovirus.  The rationale of this -- and it

 

 13   was not positive -- the rationale for this is that

 

 14   if AAV arrives to semen, then, it can expose motile

 

 15   sperm, and in the rabbit, motile sperm seemed to be

 

 16   associated with AAV.

 

 17             So the question then is can these carry

 

 18   the genomes into the embryo via the natural

 

 19   fertilization process.  As I pointed out in my

 

 20   talk, that is not easy to do, and we certainly did

 

 21   not find that to be the case with adenovirus, even

 

 22   at 100 viruses per cell, so we would not predict it

 

 23   to be positive, mostly because of the investments

 

 24   of the sperm are mostly lost en route through the

 

 25   zona, and so on.

                                                               150

 

  1             So we don't expect it to be positive.  If

 

  2   it's positive, we have to look at why that is true,

 

  3   whether it is really transduction or whether it is

 

  4   so much AAV in our IBF prep that we couldn't get

 

  5   rid of it all, something like that.

 

  6             DR. SALOMON:  So, Jon, I have to ask the

 

  7   stupid question.  So why did your DNA experiments

 

  8   work when you coated the sperm, so why does that

 

  9   work?

 

 10             DR. GORDON:  That works only if you load

 

 11   the sperm into a microneedle, push the microneedle

 

 12   through the zona, then through the plasma membrane

 

 13   of the egg, and then insert the sperm with the DNA

 

 14   around it directly into the cytoplasm.  That works.

 

 15   I say to you that I don't believe the Cell paper

 

 16   which said that just mixing it with DNA and doing

 

 17   IBF works, since no one seems to be able to repeat

 

 18   it including me.

 

 19             DR. SALOMON:  Thank you for that

 

 20   clarification.

 

 21             DR. KAY:  I just want to make a comment

 

 22   that even under the very worse scenario, where you

 

 23   do get carrying in of the single-stranded genome

 

 24   into the embryo, at very low copy number, even one

 

 25   copy, the chances that that single-stranded genome

                                                               151

 

  1   is going to become double-stranded is very low.

 

  2             DR. GORDON:  Another final comment about

 

  3   the thing I said about exposing them and then

 

  4   looking for expression in embryos, that is a

 

  5   problem with the kinetics of AAV genome activation.

 

  6   It takes a long time, as I understand it, to

 

  7   actually turn the genes on, and so the experiment

 

  8   is a little bit less easy to do with that, as are

 

  9   experiments with protamine promoters, and so on,

 

 10   with AAV, just because it takes a long time to turn

 

 11   the genome on.

 

 12             DR. SALOMON:  Dr. Rao.

 

 13             DR. RAO:  This is for Dr. Arruda.  There

 

 14   are two things which weren't absolutely clear to me

 

 15   in your presentation.  When you showed the

 

 16   spermatogonia in culture and you looked at AAV

 

 17   infection with the high MOI of infection, there

 

 18   were some infection.  You showed 293's at the same

 

 19   time?

 

 20             DR. ARRUDA:  Yes.  We have two cell lines

 

 21   as control.  Those are 293 cells with human cell

 

 22   line and the murine cell line, the fibroblasts,

 

 23   that was positive.

 

 24             DR. RAO:  But the spermatogonia were not?

 

 25             DR. ARRUDA:  The murine spermatogonia was

                                                               152

 

  1   not.  That experiment was murine spermatogonia.

 

  2             DR. RAO:  And when you see positivity in

 

  3   the rabbit motile sperm, fractionated sperm, where

 

  4   do you think the virus is there?  I mean you

 

  5   fractionate the rabbit sperm.

 

  6             DR. ARRUDA:  Yes.

 

  7             DR. RAO:  And you take the motile

 

  8   fraction, which you now have purified.

 

  9             DR. ARRUDA:  Yes.

 

 10             DR. RAO:  You think there are no

 

 11   contaminating cells, right?  And you see by PCR

 

 12   that there is some positivity, right?

 

 13             DR. ARRUDA:  That's correct.

 

 14             DR. RAO:  Where do you think that is

 

 15   coming from?

 

 16             DR. ARRUDA:  If you remember, even when we

 

 17   use what we call the optimal protocol, it is a list

 

 18   developed for rabbits, reagents for rabbits, we

 

 19   still see some debris, which you don't know which

 

 20   kind of cells are those, and also no motile sperm

 

 21   cells, other than, any other, so it is a more

 

 22   concentrated fraction of motile sperm up to 87 or

 

 23   95 percent, but we still see some of those.

 

 24             Just from technical reasons like if the

 

 25   animal has very little, urinated during the

                                                               153

 

  1   procedure, you are contaminated, you don't see that

 

  2   unless the thing turns out to be yellowish, things

 

  3   like this.

 

  4             DR. SALOMON:  Dr. High.

 

  5             DR. HIGH:  I just want to underscore the

 

  6   point that you raised in that question, because it

 

  7   is really critical to the kind of analysis that we

 

  8   are trying to do, and I am not sure we are really

 

  9   on the right track.

 

 10             That is, that what semen fractionation

 

 11   does is enrich for motile sperm, but it doesn't

 

 12   really exclude all other cell types, so when you

 

 13   take semen fractionation and couple it with a

 

 14   procedure like PCR, which will certainly detect

 

 15   small amounts of contaminating material that may

 

 16   not be from motile sperm, then, have we really come

 

 17   up with the best test.  So your point is well made.

 

 18             DR. DYM:  This is for Dr. Kay.  It is sort

 

 19   of a comment, maybe a question related to maybe why

 

 20   it seems difficult to get the vectors into the

 

 21   germline or into the gonads.

 

 22             When you put it into the liver, it, of

 

 23   course, goes straight into the liver, maybe a

 

 24   little bit goes via the artery, gastroduodenal

 

 25   artery to the upper part of the GI tract, and then

                                                               154

 

  1   it goes into the capillary spaces, and so on, then

 

  2   back to the heart, back to the aorta.

 

  3             Now, those testicular arteries, I know

 

  4   them very well in the human also.  They are tiny,

 

  5   little things, and it may not just get down there

 

  6   again.

 

  7             DR. KAY:  I actually would say that it

 

  8   probably does, and let me explain how the liver

 

  9   flow works.  First of all, the catheter is

 

 10   ballooned at a point that is past the

 

 11   gastroduodenal, so there shouldn't be backflow into

 

 12   that artery directly.

 

 13             However, even by clamping off the hepatic

 

 14   artery, most of the blood flow through the liver

 

 15   still occurs because 60 percent of blood flow

 

 16   through the liver is through the portal

 

 17   vasculature.

 

 18             So, what we suspect happens is that you

 

 19   get actually infusion into the liver, and that you

 

 20   actually get washing into the venous side through

 

 21   the portal circulation into the vena cava, and then

 

 22   you get disseminated flow.

 

 23             If you look at animals in biodistribution

 

 24   studies that have got an hepatic artery or portal

 

 25   vein, or what have you, you do find the vector in

                                                               155

 

  1   other tissues, but at very low concentrations.  To

 

  2   the best that we can tell, at a reasonable rate,

 

  3   and, you know, we can define that statistically or

 

  4   not, the only other tissue that we have really seen

 

  5   anything that would be even suggestive of

 

  6   transduced cells is a rare positive cell in the

 

  7   spleen.

 

  8             DR. DYM:  Do you know then the clearance

 

  9   of this?

 

 10             DR. KAY:  No, we don't know that.  That is

 

 11   something that we are actually working on in animal

 

 12   models. It is almost impossible to do in mice, and

 

 13   we have developed some surgical techniques in the

 

 14   rat where we have actually clamped off the vena

 

 15   cava in the portal vein and then just infusing the

 

 16   liver, let it sit at different dwell times and then

 

 17   release the clamp, and then are looking at how much

 

 18   gets into the rest of the circulation.

 

 19             I think the question is how much of it

 

 20   gets into the liver on the first pass, and things

 

 21   like that, and we don't have a definitive answer

 

 22   for that, but we are doing studies as best we can

 

 23   to try to address it.

 

 24             DR. SALOMON:  Dr. Gordon.

 

 25             DR. GORDON:  I just wanted to reemphasize

                                                               156

 

  1   again this discussion with Dr. High that just

 

  2   preceded that, if the motile sperm fractionation

 

  3   results in the detection of this material, that

 

  4   doesn't mean that it is on the sperm, but it

 

  5   certainly means that the sperm could come in

 

  6   contact with it.  That is really the issue in these

 

  7   IBF strategies.

 

  8             If the sperm can come in contact with it,

 

  9   does that mean that they can carry it in and cause

 

 10   vertical germline transmission, and that is why I

 

 11   feel it is necessary to make sure that you do that

 

 12   experiment.

 

 13             I can tell you that with adenovirus they

 

 14   don't. I think it is hard to do that, and I don't

 

 15   think it will happen with AAV either, but a

 

 16   discussion of exactly where it is sitting in the

 

 17   motile sperm fraction isn't really that relevant.

 

 18   You know that that means it could come in contact

 

 19   with motile sperm.

 

 20             DR. SALOMON:  Do we know that there is any

 

 21   heparan sulfate proteoglycans on the sperm itself?

 

 22   I know that they showed the picture that the

 

 23   spermatogonia and the seminiferous tubules seemed

 

 24   to be negative.

 

 25             DR. GORDON:  I don't know the answer to

                                                               157

 

  1   that.

 

  2             DR. SALOMON:  I guess that follows up to

 

  3   me a question.  That is, you showed the HSG

 

  4   expression in the seminiferous tubule as a point

 

  5   like reassuring us that the target wasn't there.  I

 

  6   am not an expert on AAV, so I defer to my

 

  7   colleagues on this.

 

  8             I mean is that it?  I mean there is not

 

  9   other cell attachment molecule?  I mean if so, that

 

 10   would seem to be rather unique since every time I

 

 11   think that is it, there is always something else.

 

 12             Jude?  Obviously, I am looking at you.

 

 13             DR. SAMULSKI:  It has been shown that FGF

 

 14   will also bind to virus, and we know that alpha-V,

 

 15   beta 5 is like a co-receptor, so it is not an all

 

 16   or none scenario, but it is a good indicator if

 

 17   those cells are likely to take virus up.  You

 

 18   typically heparan.  It is not just heparan itself

 

 19   either, it's high sulfonated heparan, so there is

 

 20   different kinds of heparan.

 

 21             DR. MULLIGAN:  The infection point in the

 

 22   rabbit, how does the rabbit compare for AAV2

 

 23   relative to other kinds of cells?  That is

 

 24   obviously, the model is only as good as how

 

 25   sensitive it is.  Is there a way you have tried to

                                                               158

 

  1   look at a range of different rabbit kinds of cells

 

  2   versus other kinds of cells, human cells to see if

 

  3   rabbit cells are equally, in a general way,

 

  4   susceptible to infection?  There is definitely in

 

  5   the AAV serotype business, great differences, not

 

  6   only species differences, but also obviously,

 

  7   tissue differences?

 

  8             DR. ARRUDA:  We have some idea.  As I

 

  9   said, we inject the same vector that has been used

 

 10   in the clinical trials, so it is expressing human

 

 11   factor IX, and the cohort of animals, that is of

 

 12   the highest dose, we are able to detect human

 

 13   factor IX in the rabbit plasma.

 

 14             So what this tells us is that I can say

 

 15   how it transduce efficiently in liver cells.

 

 16             DR. MULLIGAN:  Comparable to the amount

 

 17   you have?

 

 18             DR. ARRUDA:  No, it's lower than because

 

 19   the major difference is that we did I.V. infusion,

 

 20   not deliver into the hepatic artery, and if you do

 

 21   these in the same animal, you see 5 or even less

 

 22   expression follow I.V.  That is why we have to go

 

 23   into the hepatic artery.

 

 24             DR. MULLIGAN:  If you just compare I.V.

 

 25   and the amounts versus the rabbit, is it

                                                               159

 

  1   comparable?

 

  2             DR. ARRUDA:  I would say not, because the

 

  3   mouse, we inject -- you can correct me -- some of

 

  4   this, like C57, they respond very well to I.V.

 

  5   infusion compared with even other strains.

 

  6             DR. KAY:  I think there is a complicating

 

  7   factor and that using human factor IX in a rabbit,

 

  8   and do the rabbits develop inhibitors?  I mean

 

  9   because you get a slow rise of expression over

 

 10   time, you may never hit the peak level, and in

 

 11   mice,  you know, it is very dependent on different

 

 12   strains.

 

 13             DR. MULLIGAN:  I know it's complicated,

 

 14   but I mean that ultimately the question is whether

 

 15   or not there is a way to have a sense of whether or

 

 16   not the rabbit is as susceptible.  I mean the

 

 17   argument in a way goes to your favor in that the

 

 18   animal models for AAV may not be that good because

 

 19   of the differences, like with the VSVGs, a

 

 20   pseudotype, you can infect all kinds of different,

 

 21   1,000 tissues.

 

 22             AAV seems somewhat different as a vector

 

 23   system because there are such big differences from

 

 24   species to species and tissue and tissue.  So it is

 

 25   not clear whether the rabbit would be a better or

                                                               160

 

  1   worse system, but it would be nice to have a sense

 

  2   of typical tissues that people attempt to do

 

  3   transduction with, is it comparable.

 

  4             DR. SALOMON:  So you want to see data in a

 

  5   rabbit, for example, showing that intrahepatic

 

  6   artery injection has a somewhat similar

 

  7   transduction efficiency.

 

  8             DR. MULLIGAN:  LacZ and muscle, in a

 

  9   rabbit muscle, looking at the number of positive

 

 10   muscles -- Jude, you must have done this sort of

 

 11   thing.  No?

 

 12             DR. SAMULSKI:  Officially, we have not

 

 13   done this experiment.

 

 14             DR. MULLIGAN:  How about unofficially?

 

 15             DR. SAMULSKI:  Unofficially, we haven't

 

 16   done it either.

 

 17             [Laughter.]

 

 18             DR. KAY:  Can I raise the issue of

 

 19   hematogenous spread again?  I mean this vector,

 

 20   unlike the retroviruses and other vectors that are

 

 21   being used, that have a potential to integrate, are

 

 22   not pseudotyped, and they basically represent the

 

 23   capsid of the wild-type virus.

 

 24             During wild-type infection, there is going

 

 25   to be some hematogenous spread although I am not

                                                               161

 

  1   sure that anyone knows what the concentration is,

 

  2   and yet we haven't had any evidence of the AAV

 

  3   sequences into the human germline, unlike what has

 

  4   happened with most mammals with retroviruses.

 

  5             So, I think, in nature, that there is some

 

  6   hematogenous spread of the wild-type virus, yet it

 

  7   hasn't been detected in our germline.

 

  8             Any comment on that?

 

  9             DR. MULLIGAN:  I want to switch back to

 

 10   this infection question.  In the case of doing in

 

 11   vitro infections, there are different kinds of

 

 12   cells, my impression was that people often with AAV

 

 13   use very, very high multiplicities of infection

 

 14   like 10,000 to 1, or 50,000 to 1.

 

 15             Do you feel comfortable that you have

 

 16   really, in the in vitro rabbit infections, really

 

 17   dosed, put on a virus to potentially detect

 

 18   something?

 

 19             The question was, when you do in vitro

 

 20   infections, different kinds of cells, what is the

 

 21   maximum multiplicity of infection that you use to

 

 22   see if something could be infected?  Is it 5,000 or

 

 23   is it 50,000?

 

 24             DR. SAMULSKI:  In our hands, we have seen

 

 25   things like certain fibroblasts or real refractory,

                                                               162

 

  1   and you need about 100,000 particles to it

 

  2   transduced.

 

  3             DR. MULLIGAN:  That was my impression.  So

 

  4   the question is, have you really, with all the

 

  5   vagaries of the system, have you really given it

 

  6   the greater shot, unless I got that wrong, you did

 

  7   5,000 was your multiplicity of infection?  Was

 

  8   there any reason you didn't test 10 times that?

 

  9   No.

 

 10             DR. SALOMON:  Trying to get some sort of

 

 11   themes going here, it seems to me at least three

 

 12   different things could be discussed.  The first

 

 13   would be the idea that the adenovirus associates

 

 14   with the sperm or with -- well, actually with the

 

 15   sperm itself, and therefore, would be carried into

 

 16   the female and might then enter the egg at the time

 

 17   of the sperm's fusion, and inadvertently deliver

 

 18   the genetic material from the virus.  That's one

 

 19   possibility.

 

 20             I think that that possibility, Dr.

 

 21   Gordon's and your experiment would address, so that

 

 22   is a good thing, we don't have any data yet, but it

 

 23   sounds like you have got that on track.

 

 24             The second possibility would be that the

 

 25   sperm are carrying the virus, and I am not

                                                               163

 

  1   convinced that any of the tests we have seen so far

 

  2   adequately address that.  I am not trying to be

 

  3   overcritical either, because I can see how

 

  4   difficult some of these studies are to do, and

 

  5   commend you for doing things like figuring out how

 

  6   to fractionate rabbit sperm, and it shows how

 

  7   careful you are trying to be.

 

  8             But it still seems to me that when you are

 

  9   dealing with literally millions of sperm in a

 

 10   typical ejaculate, and you are doing PCR studies

 

 11   that were sensitive down to 1 in 30,000, that this

 

 12   is not going to work, I mean that that is not very

 

 13   convincing, and specific studies of looking at in

 

 14   vivo expression, or whether you use the GMP, the

 

 15   CMD promoter or the protamine promoter, something

 

 16   along those lines haven't been done yet.

 

 17             I don't think that we really know the

 

 18   answer to that part.  I guess a third thing that

 

 19   occurs to me is that regardless of the germline

 

 20   transfer question, if semen of male patients had

 

 21   got the vector for weeks and weeks, your patient at

 

 22   the lowest dose is 14 weeks positive in semen, is

 

 23   that going to get transferred to vaginal cells and

 

 24   other cells in mothers?

 

 25             We all know through bitter experience with

                                                               164

 

  1   HIV that that is a portal to the blood, as well.

 

  2   You know, how likely is it even if we just focus on

 

  3   the semen positivity, to which there is no

 

  4   conflict, right, I mean we all agree there is semen

 

  5   positivity, are we going to see a lot of the

 

  6   partners infected and how does that impact on

 

  7   issues in terms of doing these studies?

 

  8             DR. COUTO:  One thing that we are trying

 

  9   to do to address that is with the development of

 

 10   this infectivity assay, at least try to demonstrate

 

 11   that there possibly is, even if it's there, it's

 

 12   not infectious.

 

 13             There may be vector sequences there in the

 

 14   semen, but after a couple of days, maybe it's no

 

 15   longer infectious, so that is one thing that would

 

 16   address that.

 

 17             DR. SALOMON:  So your assay would --

 

 18   infectious, though -- you are saying won't

 

 19   replicate if you add helper virus and wild-type

 

 20   adeno for the Rep and Cap genes, but it doesn't

 

 21   really address whether it just delivers the payload

 

 22   gene, right?  How likely will it be?  Tell me if I

 

 23   am being dumb.

 

 24             But I mean how likely would it be that a

 

 25   positive semen that actually has adenoviral capsid,

                                                               165

 

  1   that you inject it earlier in the hepatic artery,

 

  2   will, when injected during sexual intercourse into

 

  3   the female, just transfer it to vagina mucosa?

 

  4             DR. COUTO:  If it is able to infect the

 

  5   cells and you provide adenoviral help, it should be

 

  6   able to replicate, and that is really what we are

 

  7   asking in that assay, so I think we can rule that

 

  8   out.

 

  9             DR. KAY:  The Mollier [ph] data suggested

 

 10   that at least in the high end injected in the

 

 11   blood, although the vector DNA was detected for a

 

 12   long period of time, the biological activity of

 

 13   those particles diminished to undetectable levels

 

 14   after a very short time.

 

 15             So what I think Linda is trying to say,

 

 16   just to reiterate, is that there is a reasonable

 

 17   chance that the DNA or the particle could stick

 

 18   around, but it may not be actually infectious or

 

 19   able to transduce a cell.

 

 20             If it went into like, say, a vaginal

 

 21   epithelial cell one time, you would never see that.

 

 22   I mean it would be a single transduction event, it

 

 23   wouldn't replicate.  I guess the question is if it

 

 24   was carried in on the sperm into an oocyte, what is

 

 25   the chance of naked DNA or DNA that is partially

                                                               166

 

  1   exposed could get through the zona pellucida during

 

  2   a fertilization event.

 

  3             DR. GORDON:  All I can say to that is I

 

  4   don't think it has ever been seen in the literature

 

  5   despite claims to the contrary.

 

  6             DR. SALOMON:  I wasn't trying to make

 

  7   things too complex.  I guess I was just saying that

 

  8   we are really not discussing just the Avigen factor

 

  9   IX study even though that is on the table here, my

 

 10   feeling here is we are discussing just in general

 

 11   issues here. I greatly respect Avigen being here

 

 12   and presenting it, because it is always great to

 

 13   have a specific study to focus on, but we also

 

 14   don't want to lose sight of the fact that there are

 

 15   bigger issues here.

 

 16             So I am saying that a lot of different

 

 17   clinical trials could come along following

 

 18   potential success in the Avigen trial, and I

 

 19   certainly do wish you the best with this one.

 

 20   Those could deliver gene payloads that could be a

 

 21   lot more serious than delivering some extra factor

 

 22   IX to a woman inadvertently, so that is really all

 

 23   I am trying to say is if you start delivering --

 

 24   oh, who knows, I don't want to make stuff up --

 

 25   but, you know, just a gene payload that might be

                                                               167

 

  1   toxic, whether that would be delivered to the

 

  2   vagina of the woman and produce some problem there.

 

  3             Again, I am not trying to make that a big

 

  4   killer issue, but it seems like from everything I

 

  5   have heard that it is still theoretically possible.

 

  6             DR. MULLIGAN:  One thing that Jon's --

 

  7   what do you call them, provocative experiment --

 

  8   would test is, in principle, whether or not any

 

  9   AAV, since that is the worst case, we are soaking

 

 10   things with the AAV, and then you are doing the

 

 11   most efficient means of sex, maybe not the most

 

 12   efficient, but you are doing it so you are opening

 

 13   up as much AAV as possible, so you could look for

 

 14   things in addition to the integrated sequences.

 

 15             I think I saw that you were going to test

 

 16   only for integrated sequences.  After the in vitro

 

 17   fertilization experiment, it might be useful to,

 

 18   since you have the material, to look for whether or

 

 19   not there is AAV.  Presumably, if it wasn't

 

 20   integrated, it would be dramatically diluted, but

 

 21   it would be interesting to see if you could detect

 

 22   it, because that would address in a sense the worst

 

 23   case of whether or not, during sexual intercourse,

 

 24   you can transfer AAV, and it can persist maybe as

 

 25   an unintegrated form, but these is some infection.

                                                               168

 

  1             DR. GORDON:  We are doing that.

 

  2             DR. SAMULSKI:  I have a question, and it

 

  3   is more a curiosity.  It seems that the so-called

 

  4   debris and other contaminants are a major

 

  5   contributor to the positive results, and I am

 

  6   wondering if people here have felt that the efforts

 

  7   to purify these different fractions have been

 

  8   exhaustively done, because it seems that when you

 

  9   move to other reagents, whether they are oligos or

 

 10   plasmids, this is going to come up over and over

 

 11   again.

 

 12             If there is more energy put into the first

 

 13   step of the assay, of collecting and fractionating,

 

 14   will we move away from these long risk things and

 

 15   get into a better assay that is going to tell us

 

 16   there is something worth paying attention to.

 

 17   Again, I turn it back this way, because when you

 

 18   hear someone say this was optimized for rabbits,

 

 19   and this was optimized for humans, does that mean

 

 20   it has been done for 20 years and optimized, or is

 

 21   just gives them the result they need to get

 

 22   something away from something.

 

 23             DR. GORDON:  I just want to very briefly

 

 24   comment on that.  Even a fraction of motile sperm

 

 25   is a very heterogeneous population of cells.  I

                                                               169

 

  1   mean some of them have two heads.  Some of them

 

  2   have a huge cytoplasmic droplet, which can be close

 

  3   to the volume of a sperm.

 

  4             So when you actually try to do an

 

  5   absolutely totally pure separation of motile sperm

 

  6   from everything else with a similar density,

 

  7   similar parameters of measurement, similar

 

  8   configuration, it is very, very difficult, and I

 

  9   think that if you try to solve this problem that

 

 10   way, by getting a golden fractionation procedure,

 

 11   you are going to be chasing your tail for a long

 

 12   time, not that I want to introduce other tails into

 

 13   the discussion.

 

 14             DR. JUENGST:  So, thinking generically,

 

 15   kind of at the policy level, I think I learned two

 

 16   things this morning that increased my sense that

 

 17   there are risks here.  The first one was the idea

 

 18   that it is not just the integration of a factor IX

 

 19   gene in a harmless place on chromosome 19, but the

 

 20   random integration of genes from the episome

 

 21   presence of the vector.

 

 22             The second was the increased risk even if

 

 23   through natural fertilization, it looks low with

 

 24   artificial means of fertilization, ICSI and

 

 25   infertility techniques, so it looks like the

                                                               170

 

  1   patients who are at greatest risk, hypothetically

 

  2   speaking, worst case scenario, would be gene

 

  3   therapy patients who then had fertility problems

 

  4   and needed to go to a fertility clinic.

 

  5             DR. SALOMON:  To Jude's question, the

 

  6   other way around here would be there is still no

 

  7   evidence that these vectors are getting into the

 

  8   spermatogonia, so if you could do enough really

 

  9   well designed, basic, preclinical work, you might

 

 10   be able to make a good case that you just monitor

 

 11   the semen, and not be obsessing about all this

 

 12   purification, et cetera, you know, if you could

 

 13   convince yourself that it wasn't specifically being

 

 14   carried in the germline package of the sperm.

 

 15             DR. GORDON:  Let me just say that I think

 

 16   that is a very important point because if you

 

 17   cannot transduce the spermatogonia, then, when the

 

 18   semen are clear, you can feel that they will be

 

 19   clear, and that not another wave of spermatogenesis

 

 20   will provide more positive sperm to the ejaculate.

 

 21             DR. SALOMON:  Certainly, the data

 

 22   presented today still do not give us any cause --

 

 23   you know, there is no smoking gun yet that these

 

 24   are being delivered to germline cells.

 

 25             DR. MULLIGAN:  Jon's work wouldn't address

                                                               171

 

  1   the worst case for trying to get an earlier

 

  2   precursor infected, right?  I mean that is, you

 

  3   could think of the same Jon kind of approach where

 

  4   you would put in as much AAV into exactly right

 

  5   time and location, to do the same sort of worst

 

  6   case, and that probably would be the ultimate worst

 

  7   case.

 

  8             DR. SALOMON:  Yes.  In fact, that was the

 

  9   point I was making, too, earlier.  There was the

 

 10   issue of whether it got in or didn't, but his

 

 11   experiment addressed the latter, right, where it

 

 12   was just attached to the outside.

 

 13             But the experiments haven't been done yet

 

 14   or designed yet or proposed yet to do the ones that

 

 15   we both suggested, and that is, prove yes or no,

 

 16   whether it gets into the spermatogonia, and if you

 

 17   could get out of that, then, you could make the FDA

 

 18   and the sponsor's life a lot easier.

 

 19             DR. GORDON:  Well, I just want to say

 

 20   again that we have an abstract today at ASGT, in

 

 21   which we are developing this technique of perfusing

 

 22   intact seminiferous tubules with very high

 

 23   concentrations of vector.  I showed some of the

 

 24   stuff from adeno expressing lacZ, and again that

 

 25   would be a very highly provocative test.

                                                               172

 

  1             It doesn't seem to disturb the

 

  2   spermatogenesis much, if at all, and that, with

 

  3   nucleic acid hybridizations, you wouldn't have to

 

  4   rely on promoters and vectors with delayed

 

  5   expressions, which is AAV, would I think be a good

 

  6   standard to arrive to.

 

  7             DR. NOGUCHI:  Just to follow up a little

 

  8   bit on how provocative you be, Jon, wouldn't the

 

  9   most and even more provocative state be to expose

 

 10   sperm to AAV, and then immediately do ICSI, and

 

 11   then look at the outcomes of that?

 

 12             DR. GORDON:  I think that would work

 

 13   because then all the natural barriers to getting it

 

 14   in would be circumvented, but I do emphasize those

 

 15   are natural barriers and that is an artifactual

 

 16   situation, however, as I was saying before in my

 

 17   talk, my official talk, I mean there is a lot of

 

 18   clinical activity where these barriers are

 

 19   bypassed, and I think that we should begin to be

 

 20   interested in that subject, and I don't think that

 

 21   is the subject for this meeting, but I think it is

 

 22   a subject that the FDA needs to begin to get

 

 23   interested in.

 

 24             DR. MULLIGAN:  I like Phil's approach

 

 25   because then it is really more directed an

                                                               173

 

  1   integration question.  It is like doing a

 

  2   transgenic system where you dump in more and more

 

  3   AAV in exactly the right -- for something that

 

  4   happened, and you can see whether it does or

 

  5   doesn't happen.

 

  6             DR. NOGUCHI:  It actually pertains in a

 

  7   way, based on the discussion here, to this

 

  8   experiment, as well, if, in fact, you have the

 

  9   presence of vector even if it's not integrated, but

 

 10   it is around, it could coat the sperm or it could

 

 11   be attached to the sperm.  That is the equivalent

 

 12   of what we are talking about.  You have a vector, a

 

 13   sperm, a union with an egg, and things.

 

 14             So I think they are two different things.

 

 15   One is, is there integration into the actual person

 

 16   being treated, and then the other part, can there

 

 17   be a transmission by other than biological means,

 

 18   but just by pure mechanical. That is an issue that

 

 19   pertains, and it is related also to the question of

 

 20   how much sensitivity is enough if we are going to

 

 21   be talking about barrier contraception as a means

 

 22   to mitigate this period of washout, you know, how

 

 23   much washout is enough.

 

 24             DR. SALOMON:  I guess as long as we are at

 

 25   the most provocative experiment discussion, I mean

                                                               174

 

  1   you could simply inject the AAV into the egg, and

 

  2   then with the lacZ, and ask then in like a mouse

 

  3   embryo or in a chicken embryo or in a rabbit

 

  4   embryo, where it was distributed, and ask the

 

  5   question whether there is some unusual integration

 

  6   or whether it just quickly segregated.

 

  7             DR. GORDON:  Just a brief comment on that.

 

  8   We have another abstract at ASGT, about a

 

  9   adenovirus injection directly into embryo, and what

 

 10   we were doing was asking the question, does this

 

 11   intricate cycle of virus on coating and

 

 12   translocation of the genome to the nucleus, are

 

 13   these obligate steps for expression, which has

 

 14   always been assumed, but never been proven.

 

 15             Now, the one-celled embryo appears not to

 

 16   have a receptor for adenovirus from our

 

 17   experiments, and so what we did was injected the

 

 18   virus directly into the cytoplasm and said, well,

 

 19   we will bypass the endosome and see what we can

 

 20   get.

 

 21             We never lacZ expression under those

 

 22   circumstances.  We then say, well, let's help the

 

 23   virus even more, we will put it right into the

 

 24   pronucleus, and we have done that.  In that case,

 

 25   we see low rates of embryos that express which

                                                               175

 

  1   appear consistent with perhaps viral genomes that

 

  2   have been partially shredded by freezing and

 

  3   thawing.

 

  4             To confirm that, we took the viral genome

 

  5   and just injected the pure DNA and got a very

 

  6   similar result.  So in adeno, it doesn't appear

 

  7   that the virus can actually do its thing if it's

 

  8   not allowed to go through the regular cycle of

 

  9   infection, but AAV, which is why I asked about

 

 10   uncoating, when it uncoats, if you put that

 

 11   directly in the pronucleus, it is a single-stranded

 

 12   genome, but there is very active repair mechanisms

 

 13   in the pronucleus, and all of that, I should think

 

 14   it would work, but I don't think it has ever been

 

 15   tried.  I would be happy to try it if someone wants

 

 16   me to try it.

 

 17             DR. SAMULSKI:  So, we actually did those

 

 18   experiments, and if you remove the zona pellucida

 

 19   and inject the virus, you can get blastocysts to

 

 20   turn blue, so it will transduce those cells.  It

 

 21   doesn't work with adenovirus, just like you said,

 

 22   for the same reason.  When it comes out of

 

 23   endosomes, there is a proteolytic cleavage that is

 

 24   responsible for the virus on coat, and if you don't

 

 25   go through that pathway, it won't go through.

                                                               176

 

  1             DR. KAY:  Is it integrated?

 

  2             DR. SAMULSKI:  We only did in vitro and

 

  3   carried them out and were able to show that it

 

  4   would transduce those cells, and when we started to

 

  5   collaborate with our colleagues to implant them

 

  6   back in for embryos, the postdoc left, and all of

 

  7   this stuff stopped, so we didn't do any more on it.

 

  8             DR. GORDON:  What was the helper for that?

 

  9             DR. SAMULSKI:  There was no helper.  We

 

 10   were simply trying to find a better way of making

 

 11   transgenic animals using AAV as a way of delivering

 

 12   genes, and showed that once could physically put it

 

 13   in, it would transduce those cells, so I think

 

 14   Phil's question is partially answered, you will get

 

 15   it in, and it will work by some mechanical mean.

 

 16             And far as the stability, integration, all

 

 17   of that stuff, there are no answers at all.  It was

 

 18   just lacZ.

 

 19             DR. MULLIGAN:  What was the number of

 

 20   virus particles?

 

 21             DR. SAMULSKI:  It was extremely high.  We

 

 22   were putting in about 1010.  For a number of

 

 23   reasons, it partially was -- well, we could talk

 

 24   about it later.

 

 25             DR. SALOMON:  Any other discussions here?

                                                               177

 

  1             What the committee should feel at this

 

  2   point is that just in terms of science presented,

 

  3   that we are comfortable with the main issues, and

 

  4   then we will do the public comment and go on to

 

  5   answering the specific questions from the FDA.

 

  6                       Open Public Hearing

 

  7             DR. SALOMON:  What I would like to do is

 

  8   introduce the public comment.  Five minutes have

 

  9   been allotted to each of three speakers.

 

 10             The first speaker that I would like to

 

 11   invite up is Mr. Steven Humes of the National

 

 12   Hemophilia Foundation.

 

 13             MR. HUMES:  Good afternoon.  My name is

 

 14   Steven Humes and I am the Director of Research at

 

 15   the National Hemophilia Foundation, hereinafter

 

 16   referred to as NHF.

 

 17             NHF is a not-for-profit organization

 

 18   dedicated to improving the quality of life for all

 

 19   individuals with hemophilia and other bleeding

 

 20   disorders.  Today, we thank the members of the

 

 21   Biological Response Modifiers Advisory Committee

 

 22   for allowing us the opportunity to provide

 

 23   testimony on recent reports of the presence of

 

 24   adeno-associated virus, or AAV, in the seminal

 

 25   fluid of individuals participating in a hemophilia

                                                               178

 

  1   factor IX liver-directed gene transfer trial.

 

  2             There are at least 10 proteins in our

 

  3   blood, which must work in a precise sequence to

 

  4   make the blood clot.  A deficiency in any one of

 

  5   these proteins can lead to abnormal bleeding.

 

  6   Hemophilia A is caused by a deficiency of or defect

 

  7   in a clotting protein known as factor VIII.  A

 

  8   deficiency of or defect in clotting factor IX

 

  9   causes hemophilia B.  Both forms of hemophilia and

 

 10   other bleeding disorders are X-chromosome linked

 

 11   recessive genetic disorders.  In the United States,

 

 12   there are approximately 17,000 individuals living

 

 13   with a diagnosis of hemophilia.

 

 14             Hemophilia manifests itself by easy

 

 15   bruisability and recurrent bleeding into joints and

 

 16   muscles as well as bleeding intra-abdominally and

 

 17   into the central nervous system.  The severity of

 

 18   an individual's hemophilia is determined by the

 

 19   amount of circulating clotting factor.  The

 

 20   majority of individuals affected with hemophilia

 

 21   have severe disease.

 

 22             Individuals with severe hemophilia

 

 23   typically have eight to 10 bleeding episodes each

 

 24   month.  This chronically recurrent hemorrhaging

 

 25   causes disability, persistent pain, and sometimes

                                                               179

 

  1   death.

 

  2             In the past three decades, significant

 

  3   advances have occurred in the treatment of

 

  4   hemophilia with the development of plasma-derived

 

  5   and then recombinant clotting factor products.

 

  6   While the development of these new products has

 

  7   proved enormously beneficial, persons with

 

  8   hemophilia continue to face many difficulties that

 

  9   affect their quality of life.

 

 10             Prior to the development of viral

 

 11   inactivation technologies, many individuals with

 

 12   hemophilia were infected with HIV and hepatitis

 

 13   through their unwitting use of contaminated

 

 14   clotting factor products.  The HIV epidemic has

 

 15   cost this community dearly, causing the deaths of

 

 16   over 6,000 hemophilia patients, their spouses,

 

 17   partners, and children.

 

 18             Today, an additional 2,200 continue to

 

 19   live with HIV and its complications.  It is

 

 20   estimated that more than 70 percent of all persons

 

 21   with hemophilia have been exposed to hepatitis C.

 

 22   While the development of recombinant factor

 

 23   significantly improved safety, it is sometimes in

 

 24   shortage and also an extraordinarily expensive

 

 25   medicine, especially for individuals with severe

                                                               180

 

  1   hemophilia who must treat frequent bleeding

 

  2   episodes or who self-infuse prophylactically as

 

  3   often as three times per week.

 

  4             Because of the many challenges facing this

 

  5   community and the limitations of current treatment

 

  6   modalities, we look to gene therapy as the most

 

  7   promising approach to cure hemophilia.  To this

 

  8   end, NHF has funded numerous gene therapy projects

 

  9   and five scientific workshops on gene therapy, and

 

 10   two-day gene therapy symposium is planned for our

 

 11   annual meeting in October 2002.

 

 12             We believe that research into a monogenic

 

 13   disorder such as hemophilia may also lead to

 

 14   progress in the treatment of more complex

 

 15   disorders, such as multi-gene inherited disorders,

 

 16   as well as cancer.

 

 17             In 1996, an NIH report on gene therapy

 

 18   recognized hemophilia as one of the most likely

 

 19   disorders for which gene therapy will succeed.  We

 

 20   believe that this statement is as true today as it

 

 21   was six years ago.

 

 22             In the fall of 2001, vector

 

 23   biodistribution studies from a factor IX deficiency

 

 24   gene therapy trial noted the presence of AAV vector

 

 25   in the semen of a trial participant.  That study

                                                               181

 

  1   also noted that while vector was present in the

 

  2   seminal fluid, there was no evidence of

 

  3   transduction of sperm.

 

  4             On November 17, 2001, NFH's Medical and

 

  5   Scientific Advisory Council, or MASAC, reviewed

 

  6   this issue and drafted its Recommendation No. 127,

 

  7   which was approved by the NHF Board of Directors

 

  8   the following day, and is attached to this document

 

  9   that you have before you.

 

 10             The recommendation requests, in reviewing

 

 11   such unexpected findings, that the Recombinant DNA

 

 12   Advisory Committee, or RAC, and the Food and Drug

 

 13   Administration consider the risks to the trial

 

 14   participant and, following appropriate analysis,

 

 15   allow trials to proceed if such risks can be

 

 16   mitigated.

 

 17             NHF believes that a case-by-case

 

 18   evaluation of unexpected findings will permit

 

 19   improvements in safety and efficacy while enabling

 

 20   continued pursuit of improved treatments for

 

 21   hemophilia.

 

 22             NHF believes that the AAV factor IX

 

 23   liver-directed gene transfer trial currently being

 

 24   conducted should continue.  As Steven Faust, a

 

 25   person with severe hemophilia and co-chairman of

                                                               182

 

  1   NHF's Advocacy Committee, stated this January

 

  2   before the RAC, we see no inherent risks in these

 

  3   findings that might cause additional risk to the

 

  4   trial subjects.

 

  5             NHF does support, however, increased

 

  6   patient education and efforts directed at improving

 

  7   the informed consent process, mitigating the risk

 

  8   of potential germline transmission through the use

 

  9   of sperm banking and requiring the use of barrier

 

 10   contraceptive methods, and long-term surveillance

 

 11   of trial subjects via PCR vector dissemination

 

 12   studies.

 

 13             Indeed, we believe that through this

 

 14   surveillance, we might learn valuable information

 

 15   about the natural history of AAV shedding that

 

 16   could prove useful in future gene therapy trials.

 

 17   NHF's MASAC has laid out detailed guidelines for

 

 18   the conduct of gene therapy trials in its

 

 19   Recommendation No. 120, dated August 16, 2001, a

 

 20   copy of which is also furnished to you.

 

 21             NHF respectfully suggests that the

 

 22   Advisory Committee consider these guidelines when

 

 23   considering future gene therapy trials.

 

 24             NHF is heartened by the preliminary

 

 25   results of gene transfer in humans.  We are further

                                                               183

 

  1   encouraged by the prompt review of the RAC and

 

  2   FDA's Biological Response Modifiers Advisory

 

  3   Committee to the vector biodistribution studies, as

 

  4   we believe that this phenomenon may occur in other

 

  5   trials.

 

  6             We share your commitment to ensuring

 

  7   patient safety, and appreciate your vigilance on

 

  8   behalf of all persons enrolled in gene therapy

 

  9   clinical trials.  On behalf of the bleeding

 

 10   disorders community, we urge your continued support

 

 11   for these trials.  If enrollment is further

 

 12   delayed, how will we determine if this gene

 

 13   transfer method offers the promise of a cure?

 

 14             Once again, we thank you for this

 

 15   opportunity to address you on this important

 

 16   matter.

 

 17             DR. SALOMON:  Thank you very much, very

 

 18   nicely articulated.

 

 19             I think it is always reasonable to point

 

 20   out when  you hear something like that, that it is

 

 21   very important for the committee to consider

 

 22   whatever decisions we make affect a group of

 

 23   stakeholders, in this case the hemophilia

 

 24   community, as well as the public, and that is

 

 25   always important to hear that in these sort of

                                                               184

 

  1   public comments and think about it.

 

  2             The next speaker is Dr. James Johnson, who

 

  3   is identified as a hemophilia patient.  That must

 

  4   have been one of the first two patients to receive

 

  5   the Avigen vector.

 

  6             Welcome, Dr. Johnson.

 

  7             DR. JOHNSON:  Dr. Salomon, Committee, good

 

  8   afternoon.  I am Dr. James Johnson.  I am from

 

  9   Edmund, Oklahoma.  I appreciate the opportunity to

 

 10   speak to you wearing several hats.  I am an

 

 11   emergency physician practicing in Cushing,

 

 12   Oklahoma, a husband and a father.  I have lived for

 

 13   45 years with hemophilia B, factor IX deficiency.

 

 14   In addition, I was blessed to participate in the

 

 15   Phase I safety trial of the gene therapy program at

 

 16   Children's, not this one, but the prior one with

 

 17   the IM injections two years ago.

 

 18             My participation began in May of 2000.  As

 

 19   a side note, I dubbed myself Lad Back No. 6, since

 

 20   I was the sixth person in that study.

 

 21             As a 45-year-old living with hemophilia

 

 22   and as a participant in a gene therapy study, I

 

 23   want to express my deepest hope that you will allow

 

 24   the current study to continue.  This research is of

 

 25   vital importance to the hemophilia community and to

                                                               185

 

  1   me personally.

 

  2             When I was born in 1957, it took two years

 

  3   for my parents to receive a diagnosis for the

 

  4   bleeding I had.  Because my head was swollen at

 

  5   birth, my parents were told I had hydrocephalus and

 

  6   would be mentally disabled.

 

  7             Once the diagnosis of Christmas disease

 

  8   was made, my parents were told that I wouldn't live

 

  9   past 20 years of age.  I kind of overdid that.

 

 10             My early treatments consisted of ice

 

 11   packs, splints, slings, and rest.  Later, I

 

 12   received infusions of whole blood and fresh-frozen

 

 13   plasma.  Finally, when I was 12, I received the

 

 14   first dose of factor concentrate.  That was 1970.

 

 15   I promptly came down with hepatitis B, and although

 

 16   I did not know it at the time, hepatitis C.

 

 17             Through the 1970s, I would go to the

 

 18   doctor and often have to be hospitalized when I

 

 19   needed treatment.  Finally, in 1979, I started

 

 20   self-infusion, which is now the standard of care.

 

 21   I was one of the blessed minority that was not

 

 22   infected with HIV, but as I said earlier, I do have

 

 23   hepatitis C.

 

 24             Also, I have suffered the ravages of

 

 25   arthritic complications of hemophilia as you might

                                                               186

 

  1   have noticed when I walked up.  When we first went

 

  2   to the hemophilia meetings, my wife said, Jim, they

 

  3   all walk just like you do.

 

  4             As you can imagine, hemophilia has

 

  5   affected every area of my life.  Like all

 

  6   hemophiliacs, I have had to deal with educational

 

  7   issues, work and employment issues, and struggles

 

  8   with insurance.  From a young age, I knew that I

 

  9   would not be able to hold down jobs that required

 

 10   great physical strength or endurance.  Fortunately,

 

 11   I am able to hold down my ER job and even do some

 

 12   extra weekend work.

 

 13             About nine years ago, I found that I had a

 

 14   hemophilic pseudotumor in my abdomen.  This was the

 

 15   result of repeated bleeds in the psoas muscle.

 

 16   There have occasionally been rebleeds which are

 

 17   very painful and often require hospitalization.

 

 18   This happened just this past week and for a while

 

 19   it looked like I wouldn't be able to make it today.

 

 20             I tell you this not for your sympathy or

 

 21   to act macho, but to let you know that even with

 

 22   today's best treatments, problems still arise.

 

 23             It has been said of the hemophilia

 

 24   community that we desire to be cured, we don't need

 

 25   to be cured.  Everyone is entitled to their own

                                                               187

 

  1   opinion, but I believe we need a cure.  Sure, there

 

  2   are treatments available, but who likes to have to

 

  3   give himself I.V. injections every time he feels

 

  4   pain come on, or injections for days to try to get

 

  5   over a bleed like the one I had this week?

 

  6             We have treatments for other diseases, but

 

  7   still work very hard for a cure.  Does diabetes not

 

  8   need a cure?  Does hypertension not need a cure?

 

  9   Does asthma not need a cure?

 

 10             As for the current gene therapy study, the

 

 11   one I was in, I enrolled about the time one of the

 

 12   other programs lost a patient.  Once the program

 

 13   started back up, I, along with my 11-year-old

 

 14   daughter and I, all had the procedure explained to

 

 15   us in great detail.  We were told of all the known

 

 16   risks, as well as the theoretical risks that they

 

 17   could imagine.

 

 18             We were given ample opportunity for

 

 19   questions.  In short, I can say from the

 

 20   perspective of both the study participant and as

 

 21   one who has been involved in doing clinical

 

 22   research myself, their informed consent procedure

 

 23   was impeccable.

 

 24             Every step along the way, I have been

 

 25   informed of any new developments.  We are still

                                                               188

 

  1   given every opportunity to ask questions or check

 

  2   in to see how things are progressing.  I have

 

  3   always been and always know I will be able to speak

 

  4   to anyone involved with the program with any

 

  5   concerns or ideas.

 

  6             I have met with all of the people involved

 

  7   with the program at Chop, from Dr. High, the

 

  8   director, to Dr. Mannow, to Amy Chu, the clinical

 

  9   coordinator, and to even lab personnel.  They are

 

 10   committed and responsible people.

 

 11             I understand that there is concern about

 

 12   the possibility of the AAV vector being present in

 

 13   the semen of some of the participants.  This was

 

 14   one of the risks that was reviewed with us before I

 

 15   participated in the earlier trial.

 

 16             It was always stressed that participation

 

 17   in the study was voluntary, there was obligation to

 

 18   participate or continue even after starting the

 

 19   study.  We were informed that I should never expect

 

 20   to father a child after the study because of that

 

 21   risk of AAV infection.

 

 22             This was fine with us as my wife had

 

 23   already had a tubal.  Those that might consider

 

 24   future children were given the opportunity for

 

 25   sperm storage.  All of my body fluids were tested

                                                               189

 

  1   for weeks afterwards.  There should be plenty of

 

  2   other subjects like myself who do not plan any

 

  3   further family.  They would be able to be in the

 

  4   studies at no risk to anyone else until more is

 

  5   known about germline transmission.

 

  6             This is an extremely important area of

 

  7   study.  Germline transmission is likely to be an

 

  8   equal problem for all gene therapy if it turns out

 

  9   to be a continuing problem here.  The hemophilia

 

 10   community, after having gone through hepatitis B,

 

 11   HIV-AIDS, and now hepatitis C, is a very tough,

 

 12   resilient, and responsible community.

 

 13             We have been on the forefront of the use

 

 14   of barrier contraception to prevent HIV infection,

 

 15   so the idea of contraception and when appropriate,

 

 16   sperm banking, is not foreign to us.  Those that do

 

 17   not like that option will not opt for the clinical

 

 18   trials, as did my own brother.

 

 19             In closing, I want to thank you for the

 

 20   opportunity to speak to you.  When I did my senior

 

 21   paper in college, over 20 years ago, I wrote of the

 

 22   potential that gene therapy would one day hold for

 

 23   curing hemophilia.  It is here.  It is a reality.

 

 24             As a member of the hemophilia community, I

 

 25   ask you to work with the gene therapy program and

                                                               190

 

  1   the community to make gene therapy research program

 

  2   safe and successful in the least time possible.

 

  3             When my daughter asks me about her

 

  4   children and hemophilia, I want to be able to tell

 

  5   her that we have the answer.  Please don't make me

 

  6   tell her that we got close, but some minor

 

  7   glitches, whether AAV or AV, stop the program.

 

  8   Therefore, her sons will be at risk for the same

 

  9   difficulties I have gone through.

 

 10             Thank you.

 

 11             DR. SALOMON:  Thank you very much, Dr.

 

 12   Johnson.

 

 13             The last speaker in the public comment

 

 14   period is Dr. Kenneth Chahine, Avigen Vice

 

 15   President for Business Development and Intellectual

 

 16   Property.

 

 17             DR. CHAHINE:  Good afternoon.  My initial

 

 18   goal was to try to bring a literative perspective

 

 19   to the committee, but after the last few speakers,

 

 20   I think that is not something I am going to try to

 

 21   do.

 

 22             My goal here today is to first present

 

 23   what we can reasonably glean from the data

 

 24   presented by my colleagues and also to present the

 

 25   assumptions that form the basis of our proposal to

                                                               191

 

  1   this committee.  In our proposal, also, we keep in

 

  2   mind the questions that the FDA posed to the

 

  3   committee.

 

  4             The second goal is to communicate our

 

  5   proposal and the rationale for that proposal.  So,

 

  6   what do we know and what can we reasonably assume?

 

  7             The first point is that the procedure is

 

  8   well tolerated, as Dr. Kay indicated.  There have

 

  9   been no risk to the patient apart from this

 

 10   inadvertent germline transmission risk that we are

 

 11   talking about today.

 

 12             The second point, which has been clearly

 

 13   talked about amongst the committee members, is the

 

 14   predictive value of the animal models with respect

 

 15   to inadvertent germline transmission.  Clearly,

 

 16   some of the animal models don't mimic the human

 

 17   biology, while others may, although even the rabbit

 

 18   dose and clearance times seem to be different from

 

 19   what we are seeing in the first two patients.

 

 20             The one consistent trend, however, is that

 

 21   in all of the animal models, the vector is either

 

 22   not there or it has cleared over time.

 

 23             The third point is that the motile sperm

 

 24   fraction may be positive as the dose increase, and

 

 25   will almost certainly take longer to clear, so we

                                                               192

 

  1   want to make that assumption.  I think it is

 

  2   important for the committee to just look at that,

 

  3   and I think our discussion today has brought that

 

  4   out, that the fractionation procedure may not be

 

  5   adequate to address it.

 

  6             The next point is somewhat of a practical

 

  7   point, is that the current rate and current

 

  8   clinical hold triggers, the Phase I trial is going

 

  9   to take very long to complete, and while in no way

 

 10   does this point alone justify recommendation to

 

 11   continue, it does have practical consequences for

 

 12   Avigen, the scientific community, and the

 

 13   hemophilia population.

 

 14             The next point addresses one of the

 

 15   questions that the FDA posed to the committee, and

 

 16   that is, should the enrollment be limited to

 

 17   patients or subjects which are unable to reproduce.

 

 18             Certainly, that will cause delays given

 

 19   the size of the hemophilia population, but will

 

 20   also, in the male population, talking about males

 

 21   that have undergone a vasectomy, limiting

 

 22   enrollment to this patient population will deprive

 

 23   us, the FDA, the scientific and medical community,

 

 24   of the data that we so desperately need to answer

 

 25   the very question we are here today convened to

                                                               193

 

  1   address.

 

  2             Finally, higher doses my yield therapeutic

 

  3   levels of factor IX based on the preclinical data.

 

  4   It is important to keep in mind that the primary

 

  5   purpose of this trial is certainly safety, but as

 

  6   Mark Kay pointed out, at the higher doses we do

 

  7   expect, based on the preclinical animal data, to

 

  8   get a dose that is potentially therapeutic.

 

  9             We hope that this discussion in the future

 

 10   will actually focus more on a risk-benefit as

 

 11   opposed to simply the risk, which is what we are

 

 12   discussing today of inadvertent germline

 

 13   transmission.

 

 14             So, keeping these points in mind, why is

 

 15   informed consent a reasonable and prudent safeguard

 

 16   against inadvertent germline transmission?

 

 17             The subjects are already counseled and

 

 18   educated on the potential of not only transient but

 

 19   permanent germline transmission.  The patients are

 

 20   already advised to use barrier contraceptives, and

 

 21   as we have discussed here and at the Recombinant

 

 22   Advisory Committee meeting, the risk of inadvertent

 

 23   germline transmission is low.

 

 24             The subjects are constantly monitored for

 

 25   positive semen and positive motile sperm, and

                                                               194

 

  1   germline transmission, very importantly, can be

 

  2   completely avoided by banking sperm.

 

  3             So, in our opinion, when we take the low

 

  4   risk of inadvertent germline transmission, the

 

  5   small number of subjects in the trial, the active

 

  6   use of barrier contraceptives and the sperm

 

  7   banking, these factors together reduce the risk of

 

  8   inadvertent germline transmission to acceptable

 

  9   levels especially when we weigh the risk against

 

 10   the enormously valuable data we will be able to

 

 11   collect, at no risk to the subject, and the

 

 12   potential benefit to the hemophilia community.

 

 13             So what we propose is the following.

 

 14             That Avigen should continue its assay

 

 15   development and preclinical studies in various

 

 16   animal models.  While there is some question about

 

 17   the validity of some of the animal models that we

 

 18   are studying, I hope it is clear that Avigen is not

 

 19   trying to skirt or avoid this issue, but we are

 

 20   aggressively going after an answer.

 

 21             The informed consent should be reviewed

 

 22   and updated as needed to reflect the current data,

 

 23   as we have between the first two patients.

 

 24             The Phase I trial should be allowed to

 

 25   continue regardless of whether the motile sperm

                                                               195

 

  1   fraction is positive, and that just goes back to

 

  2   the difficulties that we have had in the motile

 

  3   sperm, and once we get to, let's say, the next

 

  4   dose, we are assuming that we are going to actually

 

  5   get some contaminations that are going to give us a

 

  6   positive signal.

 

  7             The subjects should be monitored until

 

  8   three monthly semen samples are negative.  That is

 

  9   currently in the protocol already.  We should, even

 

 10   though the value of the fractionation procedure is

 

 11   a question, we want to continue to find out and

 

 12   maybe improve, as has been suggested here today.

 

 13             We also want to ask a question that is

 

 14   very important and the committee has raised today,

 

 15   which is whether the vector sequences in the semen

 

 16   actually represent biologically active vector.

 

 17   That is just not very clear.

 

 18             If we can do this and continue the trial,

 

 19   we can use the clinical data to identify predictive

 

 20   inadvertent germline transmission preclinical

 

 21   model, which will help if this trial hopefully goes

 

 22   through later phases, having a predictive model

 

 23   would be very good and clearly for other AAV trials

 

 24   coming in the future.

 

 25             We want to continue to encourage subjects

                                                               196

 

  1   to bank sperm prior to the treatment, and the

 

  2   subjects will continue to be informed of their

 

  3   semen results and counseled about whether they

 

  4   should continue to use contraceptives.

 

  5             The final point is important because it is

 

  6   one of the questions that was raised by the FDA to

 

  7   this committee, which is what happens if you have

 

  8   persistent germline transmission.

 

  9             We think, and I believe that the committee

 

 10   believes, that the possibility of that is low, we

 

 11   feel like we need to have a contingency, and we

 

 12   believe that if the subjects and the partners are

 

 13   encouraged to undergo counseling by the study

 

 14   physician on a regular basis if the vector is

 

 15   persistent in the motile sperm, that that will

 

 16   mitigate against the risk of transmission.

 

 17             We selected greater than one year.  That

 

 18   was somewhat arbitrary.  We are certainly open to

 

 19   discussing with the FDA what would be a reasonable

 

 20   time frame, but that is just the one we selected

 

 21   that we thought was reasonable.

 

 22             In closing, we are convinced that there is

 

 23   a solution to the time of the completion of this

 

 24   Phase I trial, and are committed to working with

 

 25   the FDA to find and implement such a solution.

                                                               197

 

  1             Thank you.

 

  2             DR. SALOMON:  Thank you very much.

 

  3             The schedule shows lunch.  I think you may

 

  4   have intuited that I wasn't planning on lunch, and

 

  5   just go into answering the questions.  I just

 

  6   wanted to make sure that that was okay with

 

  7   everybody.

 

  8                Committee Discussion of Questions

 

  9             We have a series of questions.  I am very

 

 10   comfortable that we have set most of the

 

 11   intellectual background here to do this.  The first

 

 12   question:

 

 13             1.  If vector sequences are detected in

 

 14   the motile sperm fraction of clinical trial

 

 15   subjects, the current approach of the FDA is to

 

 16   suspend accrual to the study -- in other words, put

 

 17   it on a clinical hold, and that is what happened in

 

 18   this case, just to make sure that everybody is

 

 19   clear about that, these guys can't go forward right

 

 20   now -- regarding the persistence of the vector then

 

 21   becomes the criteria upon which the clinical hold

 

 22   is raised or not raised.

 

 23             If they are getting out of 14 weeks and

 

 24   they are still positive in their second patient at

 

 25   the lowest dose, that is how they are calculating

                                                               198

 

  1   that it would take five years to do the study, and

 

  2   it might even be longer.

 

  3             So I think most of us who have done

 

  4   clinical trials are sympathetic with that being

 

  5   very difficult.

 

  6             Enrollment has been allowed to proceed

 

  7   when there are data to show that it is negative.

 

  8   In other words, three consecutive samples.

 

  9             A.  Does the committee agree that a

 

 10   clinical hold is warranted when motile sperm tests

 

 11   positive for vector sequence or should enrollment

 

 12   be allowed to continue with appropriate

 

 13   modification made to consent documents?

 

 14             Discussion?

 

 15             Let me just point out something here.

 

 16   There is a little bit of a load in here because we

 

 17   are talking about, at least for me, this is motile

 

 18   sperm tests.  I am underwhelmed with this motile

 

 19   sperm test thing.  In other words, I think it is

 

 20   great science, but I am not sure, and welcome

 

 21   discussion on that point, that you really have to

 

 22   do motile sperm tests here, and I think it would be

 

 23   just easier to do semen.

 

 24             Go ahead.  You wanted to make a

 

 25   qualification?

                                                               199

 

  1             DR. KAY:  [Off mike.]

 

  2             DR. SALOMON:  The point is that you are

 

  3   still on hold.  I think that is the main

 

  4   clarification.

 

  5             Yes, Tom.

 

  6             DR. MURRAY:  First, just to clarify a

 

  7   factual question.  The reason you are underwhelmed

 

  8   by the motile sperm test, I am sorry it's unfair to

 

  9   ask Dr. Salomon a question.  I begin with a

 

 10   clarification from you.

 

 11             The reason you are underwhelmed with the

 

 12   motile sperm test, maybe I misunderstand the nature

 

 13   of the test, but if I understood it correctly --

 

 14   the first thing we are after is if we are concerned

 

 15   about germline transmission, we don't want to see

 

 16   altered genes to a child, and there are a variety

 

 17   of ways to sort of protect against that.

 

 18             The motile sperm test, as I understood it,

 

 19   was imperfect for a variety of reasons, but most of

 

 20   them had to do with the fact that you might still

 

 21   get AAV DNA even if it wasn't going to be, so it's

 

 22   a sort of both and test.

 

 23             If it came up negative, would you be

 

 24   pretty reassured that you weren't going to get?

 

 25   Okay.  But if it came up positive, you still

                                                               200

 

  1   weren't sure whether it meant that it was

 

  2   infectious or not.  Okay.  So, I have got that

 

  3   clear.  I wanted to be sure I got that clear.

 

  4             Let me start then from the back end.  If

 

  5   the concern is to prevent the transmission of

 

  6   altered DNA to offspring, there are a number of

 

  7   ways to try to achieve that.  One is to test motile

 

  8   sperm.  If it comes up negative three times in a

 

  9   row, we feel pretty comfortable that it is not

 

 10   going to happen.

 

 11             I noticed, by the way, that one of the

 

 12   spokespersons for the hemophilia community actually

 

 13   said about requiring barrier contraception.  I am

 

 14   assuming the FDA is not in a position to require it

 

 15   or enforce a requirement for barrier contraception,

 

 16   but I think we need to take that as an expression

 

 17   of the genuine concern on the part of that

 

 18   community.

 

 19             So, a second order would be to again

 

 20   strongly encourage barrier contraception, provide

 

 21   very clear informed consent.  Give the kinds of

 

 22   warnings that Dr. Gordon was, I think, alerting us

 

 23   to, say, look, a way around this is not to do ICSI

 

 24   with your current sperm after intervention, and be

 

 25   very clear about the variety of things that they

                                                               201

 

  1   ought not to do right now, to bank sperm

 

  2   beforehand.

 

  3             I mean there are a lot of things you can

 

  4   do to encourage, to sort of defeat the likelihood

 

  5   that there is going to be any transmission.  So we

 

  6   have got at least two protections there.  A third

 

  7   is -- well, think about what if the worst possible

 

  8   scenario happened, we go ahead with the trial, we

 

  9   permit the trial to continue despite being pretty

 

 10   comfortable with the test, despite the promise to

 

 11   do barrier, despite the information given in

 

 12   informed consent, a child is, in fact, conceived

 

 13   and born who is carrying an altered gene here.

 

 14             We need to think about -- we are not

 

 15   talking about a systemic kind of -- you know, a

 

 16   change in many, many of the births of many

 

 17   children, we are not talking about an intentional

 

 18   modification of a genome, we are talking about, you

 

 19   know, this is an incidental and unintended

 

 20   consequence.

 

 21             I don't have the answer to that, but that

 

 22   is the thing we would be guarding against, how

 

 23   horrible of a mora affront or of a precedent would

 

 24   that be?  I don't have an answer to that one, but I

 

 25   just want to lay it on the table.

                                                               202

 

  1             One more challenge before us.  There is

 

  2   the Avigen issue, which we need to answer.  I guess

 

  3   I should hold off for No. 2, but Question No. 2 is

 

  4   going to say, okay, it ain't just men, it's also

 

  5   women, and how are we going to think about being

 

  6   aware with women.

 

  7             DR. SALOMON:  That is Question 2, and we

 

  8   will get to that.

 

  9             To me, you have raised a couple of really

 

 10   interesting points, so let me go back to this

 

 11   motile sperm thing.  The problem I have with any

 

 12   sort of testing strategy in a clinical environment

 

 13   is the more complicated you make it, the more

 

 14   difficult it is, more expensive, more technically

 

 15   challenged, and more often is going to go wrong.

 

 16             I have heard no data that convinces me

 

 17   that if the semen is positive, that the motile

 

 18   sperm could be negative and that this is such a big

 

 19   advantage.  In the absence of that data, I continue

 

 20   to be underwhelmed with the need to be doing this

 

 21   motile sperm test, because what happens then is you

 

 22   say the motile sperm test, because of the fact that

 

 23   there is a whole bunch of manipulation, or you get

 

 24   a patient that doesn't have a large enough volume,

 

 25   although I am not quite sure why they couldn't just

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  1   dilute it up to 1 1/2 ml with saline, but anyway --

 

  2   the bottom line here is if you get into that sort

 

  3   of circumstance, it just tells you why these kind

 

  4   of assay systems are problematic.

 

  5             We would actually have to tell them -- we

 

  6   would have to have this, I would think rather silly

 

  7   discussion about how to set a quality control for a

 

  8   motile sperm test, because if they let it sit out

 

  9   on the bench for a couple hours and then they do

 

 10   this motile sperm test, and call it negative, and

 

 11   the semen is positive, well, that is bogus.

 

 12             I am just having trouble with this test,

 

 13   and I don't think it is a minor issue in terms of

 

 14   how they are going to do this trial.

 

 15             DR. MULLIGAN:  Just to directly answer the

 

 16   question, I would say that a clinical hold would

 

 17   not be warranted although I would couple the

 

 18   question in 1A to the first part of 3, and then to

 

 19   answer your question, I think the motile sperm

 

 20   thing is perfectly okay, that if we all think that

 

 21   the likely source of the AAV is probably blood or

 

 22   something, then, the best, you can separate those,

 

 23   I think it helps, and I think there are SOPs,

 

 24   people can come up with something.

 

 25             But 3, I know how you hate to jump to the

                                                               204

 

  1   next question, but I think it has to do with at

 

  2   what point, when repetitive tests showed positivity

 

  3   would everyone think that there was something so

 

  4   unanticipated that you would actually want to stop

 

  5   the trial?

 

  6             My proposal would be no, let the trial go

 

  7   on, but come up with some, maybe it's a year, throw

 

  8   out a year, if after one year there is still

 

  9   positivity, even if that was in the blood

 

 10   mononuclear cells, I think that most people would

 

 11   have grave concerns that something was happening

 

 12   that was not anticipated.

 

 13             DR. SALOMON:  I followed you up until that

 

 14   last little throw-in about peripheral blood and

 

 15   mononuclear cells, I mean because I wouldn't care

 

 16   that much of the patient integrated into a

 

 17   hematopoietic stem cell and was positive.

 

 18             I think the real issue here is only given,

 

 19   I don't know why a year, because it seems like that

 

 20   is a hell of a vector reservoir to think that you

 

 21   could keep shedding detectable vector for 12

 

 22   months?

 

 23             DR. MULLIGAN:  That's the point.  The

 

 24   point is that everything we have heard here

 

 25   suggests that you won't have persistence of the

                                                               205

 

  1   vector for that amount of time, simply by having it

 

  2   sitting there in some tissue.  Therefore, something

 

  3   is happening that is unanticipated if it is

 

  4   persisting at that point, and that could be an

 

  5   arbitrary point, but I think a year is certainly

 

  6   enough time to think that something is happening

 

  7   that shouldn't happen, at least we don't know what

 

  8   is happening.

 

  9             My point was just that a critic that would

 

 10   say, well, yeah, that could still be not in the

 

 11   motile sperm, I would say still, we would be

 

 12   worried about the patient because something very

 

 13   unanticipated has now happened, that is, if we are

 

 14   able to get hematopoietic stem cells transduced by

 

 15   AAV vectors, and you have AAV integrated, I think

 

 16   everyone would want to know that and would have

 

 17   great concern.

 

 18             DR. NOGUCHI:  Just to add more confusion

 

 19   to that particular point, the hemophilia trial for

 

 20   factor VIII, and the Chiron proposal, they did

 

 21   report to the same committee that in a situation in

 

 22   which there was a very fractional and very

 

 23   short-lived positivity in the semen, that, in fact,

 

 24   they were able to detect positive peripheral blood

 

 25   samples for I believe well over a year.

                                                               206

 

  1             That was the unexpected finding in that

 

  2   particular case.  Probably an encouraging finding

 

  3   in terms of at least transduction of a somatic

 

  4   cell, I would guess.

 

  5             DR. SALOMON:  I think that everybody in

 

  6   this field is clear that the amount of time that

 

  7   even the episomes persist, and whatever small

 

  8   integration occurs or whatever, in different

 

  9   populations, I think Jude was very good about

 

 10   pointing out that there is some data, but it is not

 

 11   completely tested.  Is that a fair characterization

 

 12   of what you said?

 

 13             The fact that it would be around, it could

 

 14   be a positive for this as a gene therapy strategy,

 

 15   I am not concerned about it, I think the issue has

 

 16   to focus on the sperm or the semen as a test.  My

 

 17   only issues there are technical, but if it is in

 

 18   the sperm at a year, then, it seems to me it is

 

 19   impossible -- well, is it impossible that at that

 

 20   point -- I just can't imagine you are shedding

 

 21   viral reservoir any longer.  The implication at

 

 22   that point would be that it has been integrated

 

 23   into the germline.

 

 24             DR. MULLIGAN:  I think the point of

 

 25   setting some long period at which you would stop

                                                               207

 

  1   and take another look is you want to address it in

 

  2   a way that was not in the clinical protocol.

 

  3             DR. SALOMON:  I am agreeing.  I am just

 

  4   bringing up some discussion points on the timing.

 

  5             DR. DYM:  This is an unrelated comment,

 

  6   but it is on the same issue.  With the subject No.

 

  7   2, who has AIDS, I think is what we were told, and

 

  8   spermatogenesis is markedly reduced in patients

 

  9   with AIDS, and this is shown, of course, in the

 

 10   total semen volume, 200 microliter, 150, 150, it is

 

 11   very unlikely that this particular patient will be

 

 12   fertile. I don't know if that is an issue or should

 

 13   be raised.

 

 14             DR. KAY:  Just for a point of

 

 15   clarification on the patient No. 2, the patient is

 

 16   HIV-positive, his CD4 count at the time, that last

 

 17   one that we checked, was around 340.  He has had

 

 18   children in the past, and based on his total sperm

 

 19   count, he actually has a normal number of sperm in

 

 20   the ejaculate, but the volume is very low, so from

 

 21   what we can get from that, the spermatogenesis

 

 22   itself is normal, but there is something wrong with

 

 23   the ability to make the fluids.  The pH of the

 

 24   fluid has been normal, suggesting that he doesn't

 

 25   have specific obstruction of a prostate versus

                                                               208

 

  1   seminal vesicle.

 

  2             DR. DYM:  I was interested in this

 

  3   question before that may be relevant.  Did you

 

  4   check the size of the testis, does he have a normal

 

  5   testis?

 

  6             DR. MAY:  Well, since I am not the

 

  7   clinical treater on this case, obviously, Dr.

 

  8   Glader, who I think had to leave to catch a plane,

 

  9   is the individual who examined him.

 

 10             DR. RAO:  I actually wanted to retread

 

 11   what Dr. Salomon and Dr. Mulligan said.  I don't

 

 12   think that it would be necessary that there should

 

 13   be a clinical hold and that that should be

 

 14   dependent on motile sperm test.  There are two

 

 15   problems in my mind with just doing the motile

 

 16   sperm test, is that -- we have already heard about

 

 17   the problems of vector carryover in semen itself,

 

 18   so even if your motile sperm test was negative, you

 

 19   would still worry about that as an issue.

 

 20             The likelihood from the way the test was

 

 21   presented, is that if your semen is negative, then,

 

 22   your motile sperm fraction is going to be negative.

 

 23   So it doesn't seem that we should be focusing on

 

 24   motile sperm test as a specific test, but rather on

 

 25   total semen.

                                                               209

 

  1             Do we necessarily need to -- which was

 

  2   part of Question 3, which you put together -- it

 

  3   didn't seem to me that you should include only

 

  4   patients who are incapable of the production, but

 

  5   there should be a time line and that patient

 

  6   consent, the forms should be modified with an

 

  7   emphasis that this is a problem.

 

  8             DR. JUENGST:  I guess my hesitation in

 

  9   originally answering your question was because I

 

 10   was hung up on the qualifier, "or should enrollment

 

 11   be allowed to continue with appropriate

 

 12   modification made to the consent documents."

 

 13             Well, no, that is not enough to modify the

 

 14   consent documents.  It is really a change in the

 

 15   protocol because informed consent is not a

 

 16   reasonable and prudent safeguard. Patients behaving

 

 17   appropriately cautiously is a prudent and

 

 18   reasonable safeguard.

 

 19             So they need to be more than simply read a

 

 20   few extra lines in the consent form.  It needs to

 

 21   be a real concerted program for making this

 

 22   education and sperm banking available, and that

 

 23   sort of thing.

 

 24             It sounds like what they have been doing.

 

 25             DR. SALOMON:  It sounds like that has been

                                                               210

 

  1   a part of their protocol even a trial or two

 

  2   earlier, which is good.  I think we are getting

 

  3   there.

 

  4             Does the committee agree that a clinical

 

  5   hold is warranted when motile sperm tests are

 

  6   positive -- let's just call it now "semen" -- you

 

  7   know, if we could vote on this, but I generally

 

  8   don't want to go there, I mean that is a decision I

 

  9   think that the FDA can come back to us.  We have

 

 10   had a discussion on this motile sperm versus semen,

 

 11   I am comfortable with the semen.

 

 12             If there is a clinical hold, is it

 

 13   warranted?  The committee to me has said no, that I

 

 14   don't think you need to put a clinical hold on this

 

 15   trial every time the semen is positive.  Does

 

 16   anyone want to take a minority opinion here?

 

 17             DR. NOGUCHI:  On that one, we might want

 

 18   to at least have a show of hands to make sure we

 

 19   understand the real kind of sense of the committee.

 

 20             DR. SALOMON:  Then, we will poll.  Do you

 

 21   want us to give you a specific on the motile sperm

 

 22   versus semen?

 

 23             DR. NOGUCHI:  I think that is very

 

 24   important.  It certainly seems like there is enough

 

 25   discussion that there is some doubt about the extra

                                                               211

 

  1   value of fractionated versus just whole semen.  I

 

  2   think it would be worthwhile for that, too.

 

  3             DR. SAMULSKI:  If we were going to poll, I

 

  4   think it is probably important that I at least make

 

  5   one or two statements about the vector aspect of

 

  6   it.

 

  7             I am not going to proclaim I know the

 

  8   answers, but I have been working at this for over

 

  9   20 years, and there are definitely trends that show

 

 10   up that are extremely consistent, that you can

 

 11   begin to feel confident about, and the virus

 

 12   integration is a trend that has been consistent

 

 13   from when this was first studied and now going from

 

 14   tissue culture to animal models, it doesn't

 

 15   integrate very efficiently.

 

 16             I think people need to understand that and

 

 17   buy into the fact that if we are going to put a lot

 

 18   of virus into people, the potential of integration

 

 19   is virtually nil to it can happen, but it is not a

 

 20   high risk potential, and then if you move away from

 

 21   that question and look at the question of if we

 

 22   have a PCR-positive signal, which is something like

 

 23   10 copies in a sample, and we are talking about 0.1

 

 24   percent of the virus ability to integrate, we are

 

 25   getting down to numbers and the amount of sperm

                                                               212

 

  1   that one is going to be transmitting, this is like

 

  2   Star Wars in some ways, trying to calculate what is

 

  3   the frequency of the planets lining up again, and

 

  4   stuff like that.

 

  5             It is so vanishing small, the risk that we

 

  6   are talking about, that from a vector perspective,

 

  7   I think there is no reason at all to put this trial

 

  8   on hold.  Where I do have my only concern, and it

 

  9   sounds like it is being addressed, is that Phil

 

 10   brought up, which is if you are mechanically going

 

 11   to have virus tracking along, and you are going to

 

 12   do experiments to see if you can come up with a way

 

 13   of artificially getting this into cells, that is an

 

 14   unknown that needs to be resolved, and I think the

 

 15   onus will fall on the group that is interested to

 

 16   get that data in front of people as soon as

 

 17   possible.

 

 18             But other than that, I am sitting here

 

 19   saying we are really discussing something that is

 

 20   virtually impossible, and I think that value of

 

 21   what can come out of the studies is a lot more

 

 22   important than us trying to talk this tightrope.

 

 23             DR. SALOMON:  I very much agree with that,

 

 24   too, and I think I am comfortable that the flow of

 

 25   this committee is going in that direction, as well.

                                                               213

 

  1             You brought up one thing, Jude, that I

 

  2   just wanted to come back to, and that is you

 

  3   suggested, I don't know if you meant it, additional

 

  4   sophistication on this testing strategy, and that

 

  5   would be do quantitative PCR, and if it is lower

 

  6   than a certain number, even that then could enhance

 

  7   one's comfort level.  I hadn't thought of that,

 

  8   because up until now, we have been talking about

 

  9   positive versus negative.

 

 10             Would you be concerned if it came out as a

 

 11   million copies?  I mean these guys are detecting it

 

 12   positive at the lowest levels at 14 weeks.

 

 13             DR. SAMULSKI:  So that is where I think it

 

 14   is prudent, and it is not just AAV when you keep

 

 15   dosing biologics, whether they are plasmids of

 

 16   oligos, at some point you are going to have a

 

 17   threshold level where it is going to be

 

 18   unpredictable.

 

 19             I think that is the kind of information I

 

 20   would like to see keep coming out of this trial, he

 

 21   didn't just persist longer, but here is how he

 

 22   persisted, it was over 1,000 or 10,000 copies per X

 

 23   amount of time, and stuff like that.  That is

 

 24   valuable information.

 

 25             DR. SALOMON:  I agree with that, and I

                                                               214

 

  1   would say that I was not impressed by a statement

 

  2   that it wasn't absolutely quantitative, but the

 

  3   signal was going down.  I think today, there are

 

  4   very straightforward ways to do quantitative PCR,

 

  5   so we don't have to really, in these settings, to

 

  6   any longer talk about nonquantitative PCR studies.

 

  7             Let's do a poll of two questions.  One

 

  8   would be the first, and that would be motile sperm

 

  9   versus semen testing, just to get that out of the

 

 10   way.

 

 11             Starting with you Jude, motile sperm or

 

 12   whole semen?

 

 13             DR. SAMULSKI:  I think whole semen is

 

 14   adequate.

 

 15             DR. DYM:  Yes, same.  Not necessary to

 

 16   differentiate between the two.

 

 17             DR. JUENGST:  For what it is worth, my

 

 18   layman's vote will go with these guys.  We don't

 

 19   differentiate.

 

 20             DR. MURRAY:  I confess I do not understand

 

 21   the merits of the two tests sufficiently to make an

 

 22   intelligent vote, but it is not because I am torn

 

 23   between two alternatives I understand well.

 

 24             MS. WOLFSON:  I would have to repeat

 

 25   exactly what Dr. Murray said.

                                                               215

 

  1             DR. RAO:  I think whole semen.

 

  2             DR. SALOMON:  I vote whole semen

 

  3   obviously.

 

  4             I am not certain.  Richard gave me what he

 

  5   would say for the second one, but I am not

 

  6   comfortable with that, so we will have to say he is

 

  7   not here.

 

  8             Let's do the second question, and that

 

  9   was, does the committee agree that a clinical hold

 

 10   is not warranted any longer with a positive semen

 

 11   test?  Jude.

 

 12             DR. SAMULSKI:  Not warranted.

 

 13             DR. DYM:  A hold is not warranted, I

 

 14   agree.

 

 15             DR. JUENGST:  A hold is not warranted.

 

 16             DR. MURRAY:  I agree that with the proper

 

 17   additional protections put in place, with Eric's

 

 18   earlier caveat about it is not just adding lines to

 

 19   informed consent, we would not require a hold.

 

 20             MS. WOLFSON:  Again, I agree with Dr.

 

 21   Murray exactly.

 

 22             DR. RAO:  I don't think a hold is

 

 23   necessary.

 

 24             DR. SALOMON:  And I don't agree a hold is

 

 25   necessary either.  Richard Mulligan told me that he

                                                               216

 

  1   also wanted to say that a hold is not --

 

  2             MS. DAPOLITO:  Dr. Mulligan should be here

 

  3   to vote, but Dr. Salomon can put his comments into

 

  4   the record.

 

  5             DR. SALOMON:  Excellent.

 

  6             The next question here would be discuss

 

  7   the implications of detecting vector sequences due

 

  8   to the presence of contaminating transduced PBMC or

 

  9   vector (either free or on the surface of a sperm)

 

 10   in the motile sperm fraction.

 

 11             Now, my sense here is we have really

 

 12   pretty much discussed that.  If the FDA comfortable

 

 13   with that?  I don't see any further discussion as

 

 14   being necessary on that one.

 

 15             Anyone else on the committee?

 

 16             [No response.]

 

 17             DR. SALOMON:  Okay.

 

 18             Question 2.  There are technical

 

 19   limitations in the ability to monitor women and

 

 20   certain men for evidence of germline alterations.

 

 21   One approach to monitoring subjects for germline

 

 22   alteration would be to restrict early clinical

 

 23   development of certain gene transfer products to

 

 24   subjects who have been shown to be capable of

 

 25   repetitively supplying adequate semen samples for

                                                               217

 

  1   analysis in order to get good data collection for

 

  2   detecting persistence of vector.

 

  3             DR. MURRAY:  That does leave out a certain

 

  4   number of potential -- about 50 percent of the

 

  5   human population actually, which is not relevant

 

  6   for the Avigen trial, but will be relevant for

 

  7   others.

 

  8             DR. SALOMON:  Correct.

 

  9             I am going to try and parse it down.  So

 

 10   the first issue would be -- I think you guys

 

 11   actually had a slide on this, am I mistaken?  You

 

 12   had a slide saying that you were redesigning -- you

 

 13   had to have more than 1 1/2 ml of semen and a

 

 14   certain sperm count, wasn't that right?

 

 15             They have already incorporated in their

 

 16   protocol, does anyone disagree with that?

 

 17             DR. SAMULSKI:  I  think it's admirable

 

 18   that they are doing it, but i also agree with Dr.

 

 19   Murray.  I don't think this is something you want

 

 20   to put in as policy because if other things come

 

 21   down that aren't related to hemophilia and the

 

 22   population can't be in an inclusion criteria, but

 

 23   based on something like this, I don't think that

 

 24   would be a direction we would want to go in.

 

 25             DR. SALOMON:  Certainly, men who were

                                                               218

 

  1   infertile and would have no danger of germline

 

  2   transmission would be excluded  from these studies,

 

  3   so I think I could think of one very good reason

 

  4   not to make it policy in the area.

 

  5             Dr. Rao.

 

  6             DR. RAO:  I was just going to add that one

 

  7   reason for worrying about sample size was because

 

  8   we were doing motility experiments and

 

  9   fractionation.  Now that the committee seems to

 

 10   have a consensus that we don't need to do

 

 11   fractionation, I think the tests can be done with a

 

 12   smaller volume, so I don't think that should be an

 

 13   exclusion criteria.

 

 14             DR. SALOMON:  All you need now would be

 

 15   enough sperm to get, let's say, 1 microgram of DNA

 

 16   -- I am sorry -- 3 to 4 micrograms of DNA, so you

 

 17   could do triplicate or quadruplicate at 1

 

 18   microgram, and from my own experience doing Tacman

 

 19   PCR, which we do a lot of in the lab, I would be

 

 20   comfortable with that, as well.

 

 21             So, that would be a sperm count of what?

 

 22   Were you guys counting 30,000 sperm for a microgram

 

 23   of DNA?

 

 24             DR. SAMULSKI:  2 x 106.

 

 25             DR. KAY:  Yes, we were using 2 to 3 x 105

                                                               219

 

  1   sperm per microgram roughly, and we need 4 or 5

 

  2   micrograms, and then the issue is recovery.

 

  3             DR. SALOMON:  Would everyone agree there

 

  4   should be a limit of, let's say, no less than 5

 

  5   million total sperm in an ejaculate as criteria for

 

  6   entering the trials at this point, 10 million?  All

 

  7   right.

 

  8             DR. KAY:  Sold.

 

  9             DR. SALOMON:  Any discussion on that

 

 10   point?  I think the intention of the committee is

 

 11   clear, and the details we would leave to you.

 

 12             Depending on the amount of data required,

 

 13   much of the early clinical experience with the

 

 14   vector might be limited to this restricted

 

 15   population.  A development program requiring

 

 16   extensive characterization of distribution to

 

 17   germline cells and germline alterations might delay

 

 18   the acquisition of adequate safety and efficacy

 

 19   data in other populations, for example, women.

 

 20             I guess we can't avoid the very important

 

 21   discussion of where women fit into these trials.

 

 22   So this gets to something that Tom, you introduced

 

 23   to us in your comments, thoughtful comments a few

 

 24   minutes ago, and that is, what is our level of

 

 25   sensitivity here, how big of a deal would it be,

                                                               220

 

  1   and that has a lot to do with the next trial that

 

  2   comes along that wants to do the study in women,

 

  3   right?

 

  4             DR. MURRAY:  Any disorder that is not

 

  5   x-linked.

 

  6             DR. SALOMON:  Or a male that has no sperm

 

  7   or falls below it, we need to think about them, as

 

  8   well.

 

  9             The interesting thing here is I mean we

 

 10   are now up against the international consensus that

 

 11   has been supported by many in the lay public, that

 

 12   the line that no one is ready to cross is

 

 13   intentional?  Germline transfer certainly.  And

 

 14   unintentional germline transfer is probably far

 

 15   enough across that line that it ought to be avoided

 

 16   at all costs, as well.

 

 17             I am very cognizant of the fact that

 

 18   depending on how this discussion goes, we have to

 

 19   be cautious that we are having an advisory

 

 20   committee advising the FDA that under certain

 

 21   circumstances, it is okay to do germline gene

 

 22   transfer, and I want to put that into context for

 

 23   the committee.  You can disagree with it, but that

 

 24   is the question.

 

 25             DR. MURRAY:  There is one piece of advice

                                                               221

 

  1   I think we could give the FDA.  It may not be very

 

  2   useful advice, but that is to --perhaps you have

 

  3   already done it, -- but basically to take stock of

 

  4   the best possible methods for evaluating germline

 

  5   alterations in females, looking at animals, looking

 

  6   at -- we have heard a variety of ways of thinking

 

  7   about looking at such alterations in males, what is

 

  8   the best state-of-the-art in thinking about this

 

  9   with females?  Granted that many of those assays

 

 10   are going to be completely unavailable with humans,

 

 11   to think about what would be the most -- morally

 

 12   permissible and without crossing the boundaries of

 

 13   mistreating human subjects, how to involve women,

 

 14   how to monitor potential germline genetic

 

 15   alterations in women.

 

 16             I don't think that is easy, maybe you have

 

 17   done it, but if you haven't, I would say it is

 

 18   probably an urgent thing.  The one thing I could

 

 19   not recommend -- we had a tough choice here -- but

 

 20   one think I clearly could not recommend is that

 

 21   women be excluded from such trials.  I suspect

 

 22   national policy would also prohibit us from making

 

 23   such a recommendation.

 

 24             DR. NOGUCHI:  Just in terms of that, FDA,

 

 25   unless there is a compelling reason to exclude one

                                                               222

 

  1   sex or another or any particular subset of man or

 

  2   woman, we would not use anything other than a very

 

  3   specific reason that is both reasonable and can be

 

  4   defended.

 

  5             DR. JUENGST:  Another thing to think about

 

  6   is where along the research time line we would be

 

  7   willing to take those risks of inadvertent

 

  8   transduction.  We do take genetic risks with

 

  9   patients when we give them chemotherapy and

 

 10   radiation, and we justify that by saying, well, we

 

 11   are saving their lives, so in a Phase III trial of

 

 12   gene therapy, we could make a very similar

 

 13   argument.

 

 14             Now, how about a Phase I safety study,

 

 15   maybe there is a distinction to be drawn there

 

 16   unless we find ourselves in the situation where you

 

 17   can't get to Phase III unless you do the Base I.

 

 18             DR. SALOMON:  That's a good point.  Just

 

 19   to highlight that you are pointing out that the

 

 20   quote, "We are doing it because we save human

 

 21   lives" is a clear indication of conviction of

 

 22   efficacy, which would allow you to accept a risk

 

 23   that is very different than in a Phase I or Phase

 

 24   II trial.

 

 25             Dr. Rao.

                                                               223

 

  1             DR. RAO:  I was just going to say that the

 

  2   general consensus that you want to be able to

 

  3   monitor, it is not an issue of whether it can

 

  4   happen or not happen or the probability, but that

 

  5   you want to have an ongoing monitoring to make sure

 

  6   that there is no evidence of germline transfer, and

 

  7   should we be excluding patients where we can't

 

  8   monitor that, and the answer is that I think we are

 

  9   doing that already when you set up a criteria,

 

 10   whether you set it for males when they can't have a

 

 11   certain sperm count, or whether you can't because

 

 12   you don't have any available tests to do that

 

 13   monitoring.

 

 14             The question is do we not need to monitor

 

 15   at all.  In my opinion, right now, with the

 

 16   available data, it is not clear because there is

 

 17   still enough not known about the virus in the sense

 

 18   what is happening in blood cells, why do we see

 

 19   persistent expression, is there some specific time

 

 20   at which you see better integration, and so on.

 

 21             So there is a finite, maybe already low

 

 22   probability that there might be germline transfer,

 

 23   but whatever that low probability, at the current

 

 24   situation, with what data is available from animal

 

 25   models, we can't say that we should include

                                                               224

 

  1   patients where we don't have any monitoring.

 

  2             DR. SALOMON:  If you think about it, there

 

  3   is a couple different ways this could go.  None of

 

  4   us, unless some -- I can't imagine are going to

 

  5   give advice that you want to permanently exclude

 

  6   women from certain kinds of trials, right, why even

 

  7   go there, that's impossible, so you can see a

 

  8   couple different ways to try and put this together,

 

  9   and I think the framework is already out on the

 

 10   table, one way is to say in the absence of really

 

 11   good definitive preclinical data that would allow

 

 12   you to say with any sort of confidence it cannot go

 

 13   into the germline, and I think we all agree you

 

 14   cannot say that quite yet, no evidence that it

 

 15   does, but no evidence to say that is can't, and a

 

 16   lot of evidence suggests that it ain't going to be

 

 17   easy and not likely, particularly with this

 

 18   particular class of vectors.

 

 19             You could say okay, really low

 

 20   possibility, so that takes a lot of the pressure

 

 21   off, but it is not enough.  So then you go on and

 

 22   say all right, fine, let's go into Phase I trials

 

 23   and let's restrict the Phase I trials to subject

 

 24   that we can monitor.

 

 25             I think the company themselves, to their

                                                               225

 

  1   credit, have taken that view, and the FDA is

 

  2   comfortable with it, and I think we have just

 

  3   refined it a little bit.

 

  4             Then, the only question left is how much

 

  5   data do we need under our belt before you allow in

 

  6   later phases of the trial, to go into women, pretty

 

  7   much saying, hey, it's not happening, and I don't

 

  8   want to get into demanding someone give us

 

  9   statistical time, like after 100.3 patients we can

 

 10   do it, but I think I am suggesting to you that

 

 11   maybe the best way to think about this is at a

 

 12   certain point, once they get to a Phase III trial,

 

 13   and there is enough confidence that none of these

 

 14   patients with no evidence of germline transfer in

 

 15   these males that can be monitored, that then you

 

 16   could relax the criteria and cautiously open it up

 

 17   to women.

 

 18             So that would be what I would suggest.

 

 19             MS. CHRISTIANSON:  Janet Rose

 

 20   Christianson.  QARA Services, formerly with Target

 

 21   Genetics Corporation.

 

 22             A brief comment with regard to selecting

 

 23   people for monitoring in Phase I.  I think there

 

 24   has got to be another consideration, and I think

 

 25   that has to do with the route of administration. 

                                                               226

 

  1   If there is no dissemination, for example, the

 

  2   present study that Target is doing is an oral

 

  3   aerosolized delivery of an AAV vector in cystic

 

  4   fibrosis patients.  I think that the way it is

 

  5   delivered, and any of the preclinical data,

 

  6   indicating if there is dissemination to the

 

  7   peripheral blood distal nodes, or whatever, should

 

  8   also have a bearing as to whether or not monitoring

 

  9   of females or nonfemales or whomever, should be

 

 10   part of that whole process.  I think that has got

 

 11   to be a point just to consider.  Maybe my glucose

 

 12   was low and it's intuitively obvious, but I did

 

 13   want to make sure that that point was raised.

 

 14             Thank you.

 

 15             DR. SALOMON:  I think that is an excellent

 

 16   point.

 

 17             Dr. Rao.

 

 18             DR. RAO:  I actually wanted to add one

 

 19   more piece to the whole monitoring issue, and that

 

 20   was just simply to argue that if the criteria or

 

 21   the worry for which you are excluding patients is

 

 22   because of germline transfer, that perhaps one

 

 23   additional criteria for inclusion is people who

 

 24   would not be, are incapable of germline transfer.

 

 25             DR. SALOMON:  The only problem with that

                                                               227

 

  1   is, it is kind of a dead end in terms of moving the

 

  2   field forward, because you would never be able to

 

  3   tell whether there was germline transfer, so

 

  4   everyone else would be standing there waiting.

 

  5             DR. RAO:  Maybe you shouldn't exclude them

 

  6   for whatever reason you want to include them in a

 

  7   study. That is all I was trying to say.

 

  8             DR. MURRAY:  In a way, we should be very

 

  9   grateful to the folks from Avigen for their

 

 10   inadvertent finding, because it really forces us to

 

 11   confront -- I don't mean just this committee, by no

 

 12   means do I mean just this committee -- I mean

 

 13   everybody who thinks about these larger issues of

 

 14   the ethics of research, inadvertent germline

 

 15   transfer, and gender equity in research, and all

 

 16   these things, it warns us about what is probably

 

 17   lurking not too far down the road, and in addition

 

 18   to my off-the-cuff injunction to FDA to sort of

 

 19   think as much as they can, I don't think this

 

 20   committee is the group to decide what the right

 

 21   balance is, but in fact, I mean RAC has had a

 

 22   recent history of doing policy conferences.

 

 23             This would be a great topic for a RAC

 

 24   policy conference, in my view, about how to balance

 

 25   the concern about monitoring inadvertent germline

                                                               228

 

  1   modification against an issue of gender equity, is

 

  2   it as we think it is, that it would be much more

 

  3   difficult to monitor in women, are we wrong about

 

  4   that?  Are there ways of monitoring this in women?

 

  5   I am not aware of any, but, you know, there are

 

  6   some fact questions there science questions, and

 

  7   then how should one sort of strike the right policy

 

  8   balance.

 

  9             One emerging suggestion, I think I have

 

 10   heard, is that you do the Phase I -- where this is

 

 11   a possibility -- you do the Phase I on males who

 

 12   have sufficient seminal fluid and sperm that you

 

 13   can test, they make 5 million sperm in an

 

 14   ejaculate.

 

 15             Now already, that creates some issues of

 

 16   gender inequity, I understand the rationale for

 

 17   that, but I think it would be a mistake to rush

 

 18   forward into that without a chance to really

 

 19   reflect on how to balance.

 

 20             There are two good things.  We are trying

 

 21   to ensure gender equity and participation in

 

 22   research, and we are trying to ensure that we can

 

 23   get a handle on inadvertent germline gene transfer.

 

 24   There are two good things.  Somebody has got to

 

 25   figure out what the right balance or plan is, and

                                                               229

 

  1   it is not a thing we are going to do by 3 o'clock

 

  2   today, and we are not the right party to do that.

 

  3             DR. NOGUCHI:  Steve, shall we work on that

 

  4   as a possibility, what Dr. Murray is talking about?

 

  5             DR. ROSE:  Certainly, it is something that

 

  6   the RAC has been discussing and will continue to

 

  7   discuss, and it is one of the policy conferences we

 

  8   have been thinking about.

 

  9             DR. NOGUCHI:  You are welcome to come,

 

 10   too, Tom, I am sure, and probably most of the rest

 

 11   of the people at the table here.

 

 12             DR. SALOMON:  Jon.

 

 13             DR. GORDON:   Yes, I am commenting.  I

 

 14   have recused myself from this discussion because as

 

 15   a committee member, and I am commenting as a member

 

 16   of the public.

 

 17             I think there are a couple of points.  One

 

 18   is that whenever you exclude a certain group of

 

 19   people from a study, regardless of the phase of the

 

 20   study, you at least have to be alert to the

 

 21   introduction of biases in the study, so I think

 

 22   people need to be aware of that.

 

 23             Is it going to be more safe for the people

 

 24   you study or less safe?  I don't think it is

 

 25   necessarily relevant in the present case, but

                                                               230

 

  1   anytime people are excluded in some sort of

 

  2   overarching parameter, then, that is a risk.

 

  3             In terms of the addition of females to

 

  4   these trials in hemophilia, not a likely issue to

 

  5   come up, but as people have point out, autosomal

 

  6   disorders it is, I think the committee might

 

  7   consider recommending that good preclinical tests

 

  8   for female germline transmission be encouraged to

 

  9   be developed.

 

 10             I mean it is not impossible to do that,

 

 11   and there is no reason why, if we have been doing

 

 12   all these things with rabbits and monkeys and all

 

 13   that with the male side, why we couldn't also do

 

 14   things on the female side.

 

 15             We have a paper where we looked at adeno

 

 16   at the female side, so there is no reason why that

 

 17   couldn't be encouraged by the committee.

 

 18             DR. SALOMON:  I would actually not want to

 

 19   go there.  I don't think as a committee, we want to

 

 20   start even getting into whether women as part of

 

 21   participation in a trial ought to undergo

 

 22   laparoscopy and removal of eggs or ultrasound

 

 23   guided biopsies, and things like that, if that is

 

 24   what you were suggesting.  I think those are topics

 

 25   for preclinical investigations and not for creating

                                                               231

 

  1   yet more complex and even potentially risky

 

  2   barriers for participation in a trial.

 

  3             DR. GORDON:  I guess I wasn't clear.  I

 

  4   believe, I emphasize preclinical studies in animals

 

  5   that would then give one more confidence that a

 

  6   human could be admitted to a study.

 

  7             DR. NOGUCHI:  Just to say that the issue

 

  8   of women is pertinent to this discussion, albeit

 

  9   it, it is an extraordinarily small population,

 

 10   there are handful of women with hemophilia, and for

 

 11   them, especially they are totally out of any of the

 

 12   normal support mechanisms.  They may not even know

 

 13   what hemophilia is because it is not something that

 

 14   they normally know about, but eventually when one

 

 15   of these things works, they are a part of the

 

 16   question.  We will have the same question as to

 

 17   whether or not it is an unreasonable risk for that

 

 18   population albeit it might be as many as on this

 

 19   hand here.

 

 20             DR. SALOMON:  I think that at the end,

 

 21   there is no way -- again, I welcome everyone to

 

 22   comment -- from my view, I don't see how one can

 

 23   refine this any further in the sense that it has

 

 24   been put very clearly that, on one hand, the

 

 25   concept of germline transfer as a potential in a

                                                               232

 

  1   clinical gene therapy trial, there has been a lot

 

  2   of discussion on that, and it is pretty much

 

  3   considered to be a line that the public doesn't

 

  4   want us to cross, and I think we have to respect

 

  5   that.

 

  6             At the same time, however, we realize that

 

  7   as we gain experience and information, we can begin

 

  8   to feel more and more confident that that is not

 

  9   occurring even though the risk may never be zero,

 

 10   and, of course, we will get into discussion and so

 

 11   I might as well bring it up, that if you show it

 

 12   doesn't happen in the males, does that mean that it

 

 13   won't happen in the females, and, of course, female

 

 14   biology is very different than male biology, we all

 

 15   realize that.

 

 16             I think there we need to put more energy,

 

 17   I think as John and others have already said, and

 

 18   to some of the preclinical models anticipating what

 

 19   is around the corner for this field, and that I

 

 20   think a reasonable leadership position from the

 

 21   committee.

 

 22             I guess the last thing we have to talk

 

 23   about, and if there is anything else, please jump

 

 24   in, but the last thing I feel we have to talk about

 

 25   is okay, so we come back in here a year from now,

                                                               233

 

  1   and we get presented data from company XYZ now, it

 

  2   is not Avigen any longer, but they did a trial like

 

  3   this and 10 of the first 50 patients are

 

  4   persistently positive in their semen at one year,

 

  5   and so they do an in-situ hybridization on motile

 

  6   sperm on these particular 10 patients, and 8 of

 

  7   them are positive in 10 percent of the sperm.  Now

 

  8   what?

 

  9             DR. DYM:  I will answer the question by

 

 10   asking a question of the virologists.  Does that

 

 11   clearly mean that it is coming from the earlier

 

 12   germ cells, or can the virus persist?

 

 13             DR. SALOMON:  We might as well get that

 

 14   question on the table.  Jude, do you want to

 

 15   comment on that?

 

 16             DR. SAMULSKI:  My feeling would be that it

 

 17   would have to be in a germ cell to persist that

 

 18   long and consistently come up positive, and for it

 

 19   to just persist, it would get diluted with time.

 

 20   All those cells kept dividing.  So this would be

 

 21   the same as the trial, they would come down over

 

 22   time, so I think you are now talking about a

 

 23   completely different situation.

 

 24             DR. SALOMON:  And they do a testicular

 

 25   biopsy and it is positive in the spermatogonia. 

                                                               234

 

  1   Now what?

 

  2             DR. JUENGST:  It's at least time to stop

 

  3   and take stock and look at where the gene is being

 

  4   integrated, you know, study what is happening, if

 

  5   it is consistent, those sort of things.

 

  6             DR. SALOMON:  That's fine.  Remember what

 

  7   Dr. Samulski pointed out very clearly is that there

 

  8   is no evidence that these vectors will integrate in

 

  9   some specific spot.  They will integrate in some

 

 10   specific spot.  They will integrate in multiple

 

 11   concatemers in many areas.

 

 12             DR. RAO:  There is two aspects to this.

 

 13   You don't know what you are doing now because the

 

 14   assumptions are wrong in some sense.  You assume

 

 15   that there will be a very low probability of

 

 16   integration, there wouldn't be germline

 

 17   transmission, and that if it did occur, there will

 

 18   be a clear-cut barrier and it wouldn't be 10

 

 19   percent.  So that I think is pretty clear.

 

 20             The question then is what do you do with

 

 21   the participants, right?  I mean what happens with

 

 22   the 10 patients that were persistently positive and

 

 23   who presumably have germline transmission, and that

 

 24   I think is a very hard question.  I don't know that

 

 25   the FDA has any authority and whether we can do

                                                               235

 

  1   anything after the fact.

 

  2             DR. SALOMON:  That, we know the answer to

 

  3   that.  They can't do anything.  But the question

 

  4   would be now, 50 of the 50 patients haven't had a

 

  5   bleeding episode in the last six months.

 

  6             DR. MURRAY:  So, it worlds.

 

  7             DR. SALOMON:  It works.

 

  8             DR. MURRAY:  I think this is not a

 

  9   far-fetched hypothetical life here.  There are

 

 10   scientists here who understand different vectors

 

 11   that may, in fact, operate very differently even

 

 12   than AAV, if I understand correctly, and some of

 

 13   then might be much more likely to incorporate to

 

 14   work themselves into spermatogonia, and so this

 

 15   scenario with the different vector system might not

 

 16   be so far fetched at all.

 

 17             So you have done right by the committee to

 

 18   ask this extremely difficult question.  I don't

 

 19   feel at all qualified to answer it right now.  I

 

 20   would have a number of other questions.  I would

 

 21   want to know, look, we are talking about a

 

 22   potential random, you know, incorporations at some

 

 23   random place in the genome of foreign DNA.

 

 24             I would like to know how many copies

 

 25   integrated, are we talking about 1, are we talking

                                                               236

 

  1   about 1,000 in each genome?  If it is thousands, it

 

  2   would seem to me that increases the chance that

 

  3   some of these mutations are, in fact, may be

 

  4   pathological.  A thousand hits is more than one

 

  5   hit.

 

  6             Do we have any analogies?  Are there other

 

  7   bits of DNA that get incorporated into the genome

 

  8   in a similar random fashion, and how do they -- and

 

  9   spermatogonia, and what we do know about their

 

 10   fate, and what do they know about the impact they

 

 11   might have on the health of any child born.  If it

 

 12   is absolutely horrendous, then, that is one thing,

 

 13   if it is, well, it happens all the time, and rarely

 

 14   really leads to any harm, that is another thing.

 

 15             So, there are still a lot of factual

 

 16   questions we would ask.  That will help, I think,

 

 17   help us sort out, but you are right, we should be

 

 18   thinking about them now.

 

 19             DR. GORDON:  As a member of the public, I

 

 20   would like to sort of suggest that the committee,

 

 21   in facing such a circumstance, should consider this

 

 22   the way other risks of drug treatment are

 

 23   considered.  Now, if you give cisplatinum or

 

 24   bleomycin to somebody, you can probably damage

 

 25   their DNA, or adriamycin to them, and there are

                                                               237

 

  1   precautions to be taken.

 

  2             In the case of germ and a gene transfer,

 

  3   which I think is a little bit exceptional because

 

  4   you provide acquisition of function, not simply

 

  5   alteration in the existing genome, there are

 

  6   precautions to be taken before the procedure is

 

  7   performed, and there are precautions that can be

 

  8   taken if, in the event, such a thing is discovered.

 

  9             If 10 percent of sperm had a new gene in

 

 10   them, that would mean that there is a 10 percent

 

 11   chance that a conceptus would have it, let's say,

 

 12   presuming those sperm function equally well, well,

 

 13   there are people carrying recessive traits around

 

 14   where there is a 25 percent chance that there is

 

 15   actually going to be genetic disease, and there are

 

 16   approaches to that problem - pre-implantation,

 

 17   genetic diagnosis, conception followed by abortion.

 

 18             So there are ways of addressing it if it

 

 19   occurs, but I think the committee is well advised

 

 20   to consider that a hold should be placed while

 

 21   those considerations are formalized.

 

 22             DR. SALOMON:  I think that is what Dr. Rao

 

 23   said.  I mean I realize this is -- I think the

 

 24   major point that I was getting at was just to

 

 25   introduce the question, and I think there has to be

                                                               238

 

  1   a limit, and I think that limit for me is that.  I

 

  2   mean if the hypothesis is wrong for any vector now,

 

  3   I am not talking about the Avigen trial, then,

 

  4   probably we should put it on hold and there should

 

  5   be discussions at the highest level, whether it be

 

  6   at the RAC, or be here, or in every place.

 

  7             That includes the appropriate science

 

  8   experts, as well as policy people and ethicists,

 

  9   because I think there, we really have crossed a

 

 10   line that has been set for us in gene delivery.

 

 11             I think what is critical to the FDA,

 

 12   though, unless someone wants to disagree with me,

 

 13   is the advice that you better make sure that any

 

 14   trial that you allow to go forward is adequately

 

 15   designed to make sure that you don't miss this from

 

 16   happening.  I mean if you are going to recognize

 

 17   it, the trial had better be designed and monitored

 

 18   properly enough to make sure we recognize it,

 

 19   because then, you have got to deal with these

 

 20   issues as a reality instead of as a theoretical

 

 21   risk.

 

 22             Any other comments from the committee,

 

 23   from the public?  Does the FDA feel like we have

 

 24   answered their questions?  Are there any additions

 

 25   or refinements, et cetera, that we should deal

                                                               239

 

  1   with?

 

  2             DR. NOGUCHI:  Once again, on behalf of

 

  3   CBER, I do want to extend our heartfelt gratitude

 

  4   for helping us over our current and future

 

  5   difficult issues that we seem to face on an

 

  6   increasingly more frequent level.

 

  7             I think the discussion yesterday and today

 

  8   is going to enable us to move forward in a much

 

  9   more cohesive and responsive and responsible way,

 

 10   and for that I only can say we are again very

 

 11   thankful.

 

 12             Based on your last comments and the

 

 13   questions you raise, however, Dan, I don't think

 

 14   you are going to necessarily be able to get away

 

 15   from this committee that easily, so I am sure we

 

 16   will see you again.

 

 17             DR. SALOMON:  There are laws that will

 

 18   govern eventually.

 

 19             Dr. Couto, did you have a comment?

 

 20             DR. COUTO:  Well, it is actually a

 

 21   question that I wanted to just ask the committee,

 

 22   because it was raised earlier, and that has to do

 

 23   with the most optimal PCR assay for detecting

 

 24   vector sequences in semen, because it was raised

 

 25   that maybe a better assay would be a quantitative

                                                               240

 

  1   PCR assay.

 

  2             One of the reasons why we are not doing

 

  3   that now is because the FDA asked us to develop a

 

  4   spiked plasmid that has a deletion in the coating

 

  5   region, and so that we could differentiate between

 

  6   our vector sequence and our spiked sequence.

 

  7             Now, we wouldn't be able to do that with a

 

  8   quantitative PCR assay, but as you have seen, most

 

  9   of our other assays, biodistribution studies are

 

 10   all done with quantitative assays, so I guess I

 

 11   would just like a little bit of clarification as to

 

 12   what people think would be the best assay in the

 

 13   clinical sample.

 

 14             DR. SALOMON:  There is two answers to you,

 

 15   but I mean there is certainly multiplex PCR where

 

 16   you could design your probe.  If they wanted the

 

 17   spiked sample deal going, I mean you could easily

 

 18   do that these days, and I can help you figure out

 

 19   how to do that if you don't know.

 

 20             Dr. Rao.

 

 21             DR. RAO:  I was just going to add exactly

 

 22   the same thing in some sense is that spiking is a

 

 23   method of quantitation, so it is a quantitative

 

 24   method of estimating what you have against a known

 

 25   standard of DNA, so I don't think there is

                                                               241

 

  1   confusion.  I mean you can even do spiked multiplex

 

  2   PCR on a quantitative fashion using Tacman type of

 

  3   assays if you want to.

 

  4             DR. SALOMON:  If you did a Tacman assay, I

 

  5   mean just to educate me a little, if you did a

 

  6   well-validated Tacman assay or I mean there is now

 

  7   other technologies, I am not doing a commercial

 

  8   blurb for Tacman, just quantitative PCR based,

 

  9   there is fluorescence, there is Cybergreen, there

 

 10   is a bunch of different ways of doing it.

 

 11             If you did that, what is the spiking thing

 

 12   for?

 

 13             DR. TAKEFMAN:  Well, the spiking, we just

 

 14   say run samples without spike, but one sample at

 

 15   least with the spike just to test for inhibitory

 

 16   effects.  So you could run QPCR on some of the

 

 17   samples.

 

 18             DR. SALOMON:  Just that same control, that

 

 19   was the main reason.  I mean sometimes you need

 

 20   spiking because there is endogenous transcripts

 

 21   that are confusing your sample, but that is not the

 

 22   issue here when you are looking at vector.

 

 23             DR. NOGUCHI:  No, semen does have a

 

 24   history of sometimes inhibiting viruses.  HIV

 

 25   detection in semen actually for many years could

                                                               242

 

  1   not be done because of inhibition.

 

  2             DR. SALOMON:  That point is well taken.

 

  3   We have been suffering with serum and plasma for

 

  4   stuff in my lab, looking at retrovirus, that is

 

  5   well taken.

 

  6             Did we miss anything?  I mean is there

 

  7   anything else people want to get on the table here

 

  8   at the last minute?  No.

 

  9             Again, I want to thank everyone at the

 

 10   committee table, and Avigen particularly.  I hope

 

 11   we haven't beaten you up too bad, but I think you

 

 12   are going home with pretty much you were hoping

 

 13   for, and I hope for the community that your studies

 

 14   go safely first and then demonstrate efficacy next,

 

 15   as I think it is clear that your stakeholders need

 

 16   a viable therapy.  If it's not Avigen, then, let's

 

 17   pray it is going to be for somebody else doing gene

 

 18   delivery doing it.

 

 19             Anyway, good luck.  Good luck to everyone

 

 20   else out there.  Travel safe and be healthy.

 

 21             [Whereupon, at 2:03 p.m., the proceedings

 

 22   were adjourned.]

 

 23                              - - -