HUM-MOLGEN archive: ETHI: BRCA testing conference

FROM: pcohen@genetic.dhs.cahwnet.gov Breast Cancer Conference Re-Cap* By Pamela Cohen, MS, CGC On August 23, 1997, the Pacific Southwest Regional Genetics Network (PSRGN) held its annual conference in San Diego on the very timely topic of Genetic Testing for Hereditary Breast Cancer with the provocative and, perhaps to some, disconcerting subheading Should We Stop It? The conference attracted over 100 genetic counselors, geneticists, oncology nurses, OB/GYN practitioners, and breast cancer consumer representatives who offered unique perspectives on one of the most publicized uses of genetic testing. The conference began with a viewing of the video "Genetic Testing for Cancer Risk: It's Your Choice", produced by the National Action Plan on Breast Cancer. This video presents two families who outline the pros and cons of testing within the context of their personal circumstances and beliefs. The opening talk by George Cunningham, MD, MPH, Chief of the California Genetic Disease Branch, presented a proposal to develop minimum standards for offering BRCA1/2 testing and to limit testing to only those health facilities which have been state-approved. The next several speakers proceeded to review the various topics that must be considered when forming such policy including epidemiological questions (Debra Gilliss, MD, MPH-Environmental Health Investigations Branch), pre-test genetic counseling (Patricia Kelly, PhD-John Muir Medical Center), post-test options (Jeffrey Weitzel, MD-City of Hope Medical Center), and laboratory issues (Tom Frank, MD-Myriad Genetic Laboratories). During the afternoon panel, Barbara Brenner, Executive Director of San Francisco*s Breast Cancer Action, argued that BRCA1/2 testing is premature given the current lack of knowledge and understanding about the implications of both gene positive and negative results and that more resources should be devoted to preventing breast cancer rather than predicting its potential occurrence. In closing the panel, Dr. David Preskill, an OB/GYN practitioner at Kaiser San Diego, who was invited specifically because he had not previously been involved in the debate, echoed Ms. Brenner's view that testing is premature. The open microphone discussion brought a wide spectrum of reactions from the conference participants. While some agreed with Ms. Brenner's position, others felt that some women would view eliminating BRCA1/2 testing as paternalistic, infringing on their rights to have access to current technologies and information. The majority of participant comments reflected concern about taking extreme measures-that is, concern about stopping BRCA1/2 testing as well as concern over allowing testing to proceed unregulated. The implicit consensus was that the implications of test results and the associated issues of genetic discrimination must be addressed and that testing should continue only through centers meeting certain legislated standards. Such standards should be developed by a multi-disciplinary working group including genetic counselors, geneticists, oncologists, breast cancer advocates, and public health professionals. * For more information or to order a video of this confernece, please contact Pam Cohen at 510-540-2852 or pcohen@genetic.dhs.cahwnet.gov