March 23, 1999

3:00pm - 4:15 p.m. (EST)

Present: Caryn Lerman, Dianne Finkeistein, Gloria Petersen, Ray White, Geri Mineau, Hoda Anton-Culver, Louise Strong, Barbara Weber, Michelle Carter, John Potter, Polly Newcomb, Joellen Schildkraut, Robert Elston, Barbara Parker, Jim Hanson, Heather Symecko

Absent: Dirk Iglehart

The minutes from the February 24-25, 1999 meeting in Irvine were discussed. Gloria Petersen suggested including the discussion on the CGN’s role in predisposition genetics versus somatic or progression genetics on page 3 of the minutes. Robert Elston and John Potter agreed with this addition. The SC, with the above change, approved the minutes. They will now be posted on the CGN web-site.

Investigators have not received feedback from the pilot proposal reviews and are working under the assumption to submit final proposals by the April 12, 1999 deadline. Jim Hanson will compile the reviews he has received, but agreed with Barbara Weber that the three proposals should be submitted by April ₁₂th·

Barbara Weber requested that sites involved in the UlPenri /Duke penetrance pilot, submit a budget to her for incorporation into the final budget. The issue of testing costs was raised. Both Barbara Weber and Hoda Anton-Culver feel that testing should be done only on those with a high likelihood of being positive in order to manage costs. There is a possibility of more widespread testing in the future, with the hiring of a postdoc at UPenn (summer 2000) focused on multiple primaries.

The deadline for submission is April 1, 1999 for the enhancement of recruitment proposals. The submission deadline for science driven projects is April 12, 1999. It had been asked if multiple sites from a consortium could apply separately for recruitment projects. Jim stated that he would prefer that only one proposal from each center be submitted, so there would be money reserved for a science driven project.

Hoda Anton-Culver expects to submit a scientific proposal and has begun to contact CGN sites for participation. She will send the remaining sites information on the proposal.

Following the Informatics Training in February, the following questions arose in regard to the Core Data Elements:

Geri Mineau raised the concern about increasing the length of an already 20 page questionnaire. Robert Elston believes it is important to collect maternal vs. paternal half-sibling information and said that it is important to capture age of the unaffected and affected relatives. He also indicated that it is possible to have different sites collect additional information, as long as the sites have sequential sampling.

Louise questioned the reason for collecting non-malignant information (tissue sampling, multistage disease, etc.) A discussion weighing the amount of data to the amount of useful data followed. Hoda requested a vote of the SC members on the above three issues, in order to direct the Family History Working Group.

Elizabeth Thompson has reviewed all submitted consents and has forwarded memos on each to Jim Hanson. Jim will distribute the memos to each site. If any questions arise, principal investigators are asked to contact Jim Hanson.

The model consent form, which contains elements related to OPRR guidelines, will be posted on the CGN web-site, under the Informed Consent Working Group.

The informed consent working group will hold their last conference call following the SC call. The group will be reformed as the Bioethics Working Group, to be chaired by Michele Carter.

Joellen Schildkraut sent out a questionnaire to committee members asking for the number of individuals available for model validation studies from each site. This information should be returned to Joellen.

John Potter announced the transfer of the populations database from Prakash Nadkami to Hoda Anton Culver.

** The next SC call will be on April 20, 1999, 3:00-5:00 (EST).