Guidelines for BIC Membership
PHILOSOPHY:
This Breast Cancer Information Core has been established to
facilitate the detection and characterization of breast cancer
susceptibility genes. It has been set up to be a repository for all
mutations and polymorphisms in these genes. More importantly, it is meant
to provide help in the form of techniques, primers, and support to those
carrying out the lab work. By having access be through membership it is
hoped that it will be a place where mutations found yet not necessarily
already published can be accessible to others working in the field.
APPROPRIATE USE OF DATA:
Members should treat the reported mutations with extreme caution for
diagnostic or population screening purpose, as some of them may not be true
mutations. In addition, there may be inaccuracy of the proposed methods of
detection, e.g.. diagnosis based on the destruction of restriction sites
may not recognize the exact alteration; even oligonucleotide
hybridization may have unexpected results. Members should therefore use
the information for research purposes only. These data are not intended
for the use of providing any clinical recommendations. Further clinical
guidelines will be added by the steering committee. Measures will
be put in place to verify some aspects of the data being submitted
to the repositories.
MEMBERSHIP:
Membership will be open to all. Membership can be obtained by
completing the membership application form found at the bottom of this
page. Continued membership is contingent on abiding by rules
regarding use and acknowledgment of the data contained herein. It is
expected that all efforts and work on BRCA1 and other breast cancer
susceptibility genes will be shared with the group. Members will be
encouraged to share these data no later than when it has been accepted
for publication.
DATA ENTRY / CONFIDENTIALITY:
Data entry will be accepted by electronic mail deposited at the BIC site.
Before data are added, it will be examined and edited by several members
of the steering committee so as to maintain the quality of the
input data. A more interactive format will be used to support the
investigator comments regarding the use of the different detection
methods. This will be achieved by the maintenence of a bulletin board
where investigators can leave notes and/or respond to the notes of other
investigators.
CONFIDENTIAL ENTRY:
Any data obtained through the group, if not yet published in a
periodic journal, should be treated as privileged information, and one
should not disseminate the information without the consent of the group.
By joining this group, members are encouraged to share information about
primers and technology improvements in mutation detection, and to screen
their population for mutations and send their data to the group database
periodically. The pooled data may constitute a subsequent publication,
with one or several members from the original groups as co-authors but
not necessarily senior author(s).
INVENTORSHIP
Inventorship of any invention provided by a member to the group shall be
determined by applicable Federal law. Ownership of any such
invention shall not reside in the group, but rather in the entity to
which the legal inventor has an obligation to assign any such invention.
Neither the group, nor any individual member or group of members, shall
be construed to be granted a license to use any such invention for
commercial purposes, unless expressly agreed to in writing by the owner
of such invention.
Material contributions and contributions that are financed by
individual members of the group cannot be used for commercial gain by any
other member of the group other than the contributing member without
consent from the contributing member. (e.g., a company provides primers
to the group as a whole; these cannot be used by other group members for
any commercial undertaking.) (e.g., a company helps finance development
of a database to be used by the group; this database cannot be used in a
commercial setting by other members of the group without permission.)
DATA ACKNOWLEDGMENT:
The groups's name will be: The BIC or BRCA1 Information Core. Upon orally
presenting unpublished data obtained from any of BIC's databases,
the presenting author's slides or overheads should clearly acknowledge the
group's name, acronym, or contributor's name (if specifics are
discussed). Group members retain the right to publish their own
contributed data without prior discussion with other participants.
However, should they wish to include information contributed by others,
consent should be obtained from that contributor. The involved groups
should seek ways to resolve amongst themselves to publish jointly (i.e.
listing all contributor's names) or as the "BIC" as a whole. The
authorship may include one or several other members of the group
depending on the involvement. Publication of mutation information
is strictly prohibited without the consent of the principal group(s) who
reported the mutation.
Upon receiving the information about possible mutation(s) through
the FAX, members should honor and give credit to the first (principal) group
who provides the data. Although there are no solid guidelines, it is
logical for the principal groups who discover the mutations to decide
issues related to publication.
FUTURE MEETING OF THE BIC:
A general meeting will be held each year. The time and location will
be announced in the Newsletters.
STEERING COMMITTEE:
The steering committee will have 1 year renewable positions.
- Merete Bjornslett
- Lawrence Brody
- Georgia Chenevix-Trench
- Fergus Couch
- Amie Deffenbaugh
- Peter Devilee
- Doug Easton
- Charis Eng
- Will Foulkes
- David Goldgar
- Frans Hogervorst
- Kathi Malone
- Alvaro Monteiro
- Kate Nathanson
- Susan Neuhausen
- Sharon Plon
- Elizabeth Swisher
- Csilla Szabo
- Sean Tavtigian
Past Members
- Anne-Lise Boerresen
- Graham Casey
- Tom Frank
- Simon Gayther
- Elaine Ostrander
- Kelly Owens
- Stephen Friend
- Andy Futreal
- Pat Murphy
- Mark Rabin
- Elizabeth Schubert
- Donna Shattuck-Eidens
- Barb Weber
- Roger Wiseman
There are four steering subcommittees. The Group Steering
Committee is currently headed by David Goldgar; the Primer Repository
Committee is headed by Simon Gayther; the Mutation/Polymorphism Repository
is headed by Barb Weber; World Wide Web Site coordination is lead by Larry
Brody (lbrody@nhgri.nih.gov).