We have two people who have asked to make public comment and if
the Council members would be willing to sit without a break, we
can have the comments and then leave. Our two guests are first
Michael Houser and the Susan Poland. I remind the guests that you
should keep your comments to five minutes or less. Welcome,and
Mr. Houser, if you'd please come to the microphone. MR. HOUSER: I want to read this, do my best.
First off, thank you, Dr. Kass and thank you for the Council. And
second, I'd like to note something from a bio that I've
read of Dr. Pellegrino. It's a quote which I'd like to
paraphrase. Something happened to him as a young man. "Substantiate
your point. Whatever you freely assert, I freely deny by the same
loose argument," is what I'd like to note. Two Protestant boys, my brother and myself, got the same lecture
or sermon from their father. His sermon was very short. "Know
whereof you speak." He never told you where the quote was
from. It was yours to find. But basically eventually I found it
and it was from Paul in his Mars Hill apologetic. I leave it at
that. I'm not here to lecture, debate, so I'm going to just be
brief and I'm going to try and cover a couple points. My purpose
in coming here is two-fold; to observe the Council in person versus
read a flat transcript; you're quite impressive, all of you.
And the second thing is to state that an assumption of surplus embryos
through IVF is not a given. I'd like to cite John Biggers,
Dr. John Biggers, "When to avoid creating surplus human embryos."
[Human Reproduction 2004 November 19 (11): 2457-9] And I've given that abstract to Diane. Related to this point, I'd like to say something on informed
consent and I'd like to say it as a dual citizen, Ireland and
the United States, and that many things that are said here really
effect the world. So I'd just like to remind the Irish Medical
Council that their ethics guidelines are clear. a physician must
state alternatives as well as benefits and risks of a procedure.
Informed consent is not just a signature. And lastly on what you've been discussing and more or less
getting with the program as it sits now, I'd like to not perhaps
comment on Richard Selzer but I'd like to note something on
page 247. He says, "What would you do on the last day of your
life?" Well, we're all going to get there. Unfortunately,
my father passed away on this very evening six years ago. And I'd
like to read a poem that my parents liked and I think it comes from
the perspective of people enjoying life in Tucson and so I'll
just get to it. It's called a Pueblo Indian Blessing. "From seeds we sprout and blossom, we give forth our fruit
then go onto life end. That's how it is." I should say
that's how it's always been. "Endure the storms, thrive
in the sun, breathe deeply and be grateful for your life".
I can't do better than that, so I want to thank everybody and
hopefully, I've said something important. CHAIRMAN KASS: Thank you very much, Mr. Houser. Appreciate
that, thank you very much. Susan Poland? Welcome back, nice to
see you again. MS. POLAND: Hello. I'd like to congratulate
both of you, Dr. Kass on a job well done and Dr. Pellegrino on assuming
the mantel. I'd like to make two comments generally, one on
bioethics and one on public — going out to the public today.
With bioethics, I think this Council has done an outstanding job
on putting bioethics, on enriching it by putting it in context both
with the literature and with using the national bodies that you
had people come and testify. I had not seen that in any other group.
That being said, recently in the June issue of the Kennedy Institute
of Ethics Journal I wrote a short piece on bioethics, biolaw
and western legal heritage which actually shook my faith in bioethics
looking at what was happening in Europe and looking at ours. And
to that extent, I will agree that you should look at non-Western
systems, particularly China, which has Confucian values with the
Communist system and how that interacts. And then still under bioethics, I recall Francis Collins at a meeting
that we went to talking about why is the National Human Genome Research
Institute the only one that's looking at ethical, legal and
social issues? Of course, everyone knows it's because of James
Watson putting that in. This Council, because it is national, is
in a unique position with the Executive Branch, to recommend to
the President that all agencies and departments look at the ethical
and other issues of their department, particularly in light of the
fact that with us working at Georgetown with the National Library
of Medicine Grant, we're confined to medicine and medical ethics
and such. We really don't have the funding nor the mandate
to look at genetically modified food or anything else along with
that, the animal research and stuff. And so I recommend to the
Council that you consider doing that. My second area has to do with the public of which I've been
one here in many of these meetings and I will congratulate you because
you probably situate your meetings the best for public transportation.
Given that they're in Washington, that really helps but usually
that's what you do maybe unconsciously. And when you do want
to look at reaching out to the public, I want you to consider whether
you want public presence or public participation or both. One of
the positions that I fill is with Case Western Reserve University
because they are now a Center for Excellence in Ethics and Research
and under them, they pay for some of my time to go around to different
meetings. So some of the meetings in the last year that I've been going
to do very well with reaching out to the public, I think, and things
that you could consider in modifying here. One is the Secretary's
Advisory Council on Genetic Health and Society. Sorry, I have to
read these acronyms. What they do is they actually have panels
come in of public. They had a very moving one which is the most
moving panel I've seen yet, is a group talking about genetic
discrimination that these people actually had experienced and it
was probably some of the most moving testimony I've seen since
I've seen Jesse Gelsinger's father testify to Congress.
They also web cast their meetings, which would get this —
it's better than a flat transcript but it really is not as good
as seeing you in person, but it will get out to other countries.
The other one which does a much better job in some different areas
is the Secretary's Advisory Council on Human Research Protection
and they, right now, are looking at revamping the CFR and one of
the areas is children. They've been discussing a lot about what to do with well children,
sick children, what are risks, what are limits. So in your future,
I would suggest looking at them. The thing that's distinctive
about them is that when you walk into their meeting room and they
meet regularly in Alexandria, the other one meets regularly in Bethesda,
they do not sit in a circle away from the public. They sit in two
sections of halves and those members are there and there's a
podium in the middle and behind each half there's a screen so
that nobody in the room is having a problem because there are two
screens facing at angles. So you have the public back here but I was taken back because the
room was practically full and I couldn't find a seat. Why?
Because they have a whole group of ex officios so they don't
just have people that are from around the country, but they have
people within town, they're actually assigned there with different
departments which surprisingly because one of them is the CIA, because
they wanted to create harmonization rather than be a conflict and
them slow down their work. I don't know if your ex officios would be congressional or
it would be judicial members or where you would pull them from,
but that made a lot more participation because they could ask things
throughout the meeting and get some immediate response. They also
meet outside of the regular public meetings so they know what they're
talking about. There's one person assigned that meets with
them. The screens and the setup I talked about so the public feels like
they're already part of the process because the podium and they're
talking more to the public. And these people are around here taking
notes and of course, typing. I, myself, am paid to monitor these
meetings, not just for Case Western, but for the other three Centers
for Excellence because National Institute of Health, the Institute
that funds us, is watching to see how well we collaborate. And lastly is public comment itself. Public comment with that
particular group one of the more interesting sessions the man that
was the head of a med school, I believe, from the Midwest, had flown
out and was appalled at what they were doing about adding more and
more layers that they never even get to when they're looking
at doing research. And he was frustrated with that, but he was
also asked to have public comment in the middle because his schedule
did not allow him to wait until the end of the meeting two full
days. And so this group had always had public comment at the very
end. I'm always witnessing people leaving and such. I would
like to see public comment more — and that goes back to my
original comment about reaching out to the public. It's not just going around and doing a road trip but it's
the question of do you want presence with the public or participation?
Thank you. CHAIRMAN KASS: Thank you very, very much. I'll say
only one tiny thing, I'll say two things. One, I'm glad
for Dr. Pellegrino that he has these comments at the start. I could
have used them earlier because some of them are really very, very
fine suggestions. One comment just on the shape of the table; that
was my doing and my doing based upon having been a presenter at
NBAC and other such meetings where you have the August people sitting
here and the audience out there. It runs the risk of being theater.
It runs — especially in Washington with hot issues like this,
when there are people out there scribbling, I would like to create
the climate in which we try to pretend that we're not —
we don't have to somehow trim what we have to say because there's
somebody out there who might take it amiss. So that we should try
to have the kind of conversation — don't take this in
the wrong — as if we were the only people in the room, not
because we don't care about who's here and participating
but because I don't want the conversation to be distorted by
posturing and by theater and by a worry about the press. So to produce a kind of more intimate setting, where people might
forget and in fact, have a much more honest conversation, that was
my insistence and that it produces a greater distance, I understand,
and there are other ways — there might be a way of trying
to do both, but with these delicate topics and lots of people afraid
of saying something, I would like them to be as little afraid as
possible. MS. POLLARD: That's fine. If you could
just also put a map out. I mean, some of them have it and if you
sit regularly, you start knowing people's voices, so I know
people sometimes a lot more from the back of their heads than the
front, but one of the groups would have a map saying who's sitting
around that table and who's at what chairs because it is —
while they're nice looking signs this time, they are harder
to read. CHAIRMAN KASS: Thank you very much. Look, the hour is late.
We're just about ready for adjournment. Let me simply say very
briefly on the record, first of all, what a privilege it has been
to have served as Chairman of President Bush's Council on Bioethics.
For a first generation child of American immigrants to be given
this opportunity to serve is just a great blessing. To be able
to serve in the company of such thoughtful, serious, public spirited
and by and large collegial and always, always respectful colleagues,
it's an experience for a lifetime and I will treasure these
days always. I'm happy to say that it's not fare well and
au revoir and I look forward to sitting not in this seat but with
my back to the audience if Ed will continue to keep this arrangement. Thank you one and all. Godspeed and we will meet again under new
and vigorous leadership. PROF. GEORGE: Leon, I don't want to steal your thunder
here but this is going to be probably the only chance in my tenure
as a member of this Council to say I speak on behalf of every member
of this Council and I want to say on behalf of every member of this
Council, thank you, not only for your leadership but for the example
of integrity, humanity and, indeed, nobility that you've set
for us all and for the nation. Thank you. (Applause) CHAIRMAN KASS: Thank you and we are adjourned. (Whereupon, at 12:04 p.m. the above entitled matter concluded.)
Friday, September 9, 2005
Session 7: Public Comments
Michael Houser and Susan Poland