Research @ NHGRI Online Research Resources Breast Cancer Information Core

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).

MEMBERSHIP APPLICATION

I hereby acknowledge that I have read the BRCA Information Core Group Agreement above and agree to join this Group under the guidelines stated.

Name:
Location:
Date:

MEMBER INFORMATION SHEET

Name of principal investigator
Title
Contact in the absence of PI
Telephone number*
FAX number*
EMAIL
Preferred Login Name (up to 8 characters)
Preferred Password (up to 8 characters)** Must be different from Login Name

* (please include country code and area code)
** (please DO NOT use a `real' password, this is not a secure web server!)
   (please use ONLY letters and numbers, no spaces, no semi-colons, or other special characters)

Reasons for joining the BIC:

Planned uses of knowledge acquired at the BIC:

Your funding sources:

Institution (site where research will be performed):

Mailing address (only if different from performance site):

Other comments: