Stanford Center for
Biomedical Ethics

Genetic Testing for Breast Cancer Susceptibility

Stanford University Program in Genomics, Ethics, and Society

What's New...

The PGES Breast Cancer Working Group's report on genetic testing for BRCA1 and BRCA2 mutations appears in the June 1998 issue of the Journal of Women's Health:

Koenig BA, Greely HT, McConnell LM, Silverberg HL, Raffin TA, and the members of the Breast Cancer Working Group of the Stanford Program in Genomics, Ethics, and Society. Genetic Testing for BRCA1 and BRCA2: Recommendations of the Stanford Program in Genomics, Ethics, and Society . Journal of Women's Health . 1998; 7 (5): 531-545.

The Breast Cancer Working Group

The 1995-96 PGES Working Group addressed "Genetic Testing for Cancer: Ethical, Legal, and Social Issues in Testing for Breast Cancer Susceptibility." We selected this topic because the issues raised have near-term implications: unlike other diseases where linkage is speculative, the possibility of screening and testing for breast cancer is real, and poses immediate ethical and practical questions.

The Breast Cancer Working Group was composed of approximately 50 active members from a variety of disciplines: medicine, oncology, OB/GYN, genetics, biochemistry, biology, psychology, psychiatry, sociology, anthropology, philosophy, law, health policy, biomedical ethics, education, economics and journalism. Participants were invited based on their involvement in breast cancer and/or genetics issues, and included faculty and health professionals from Stanford and other institutions, undergraduate, graduate and post-graduate students, and breast cancer activists and survivors from the surrounding community.

The Working Group met approximately twice monthly over a period of approximately one year. Early meetings consisted largely of interactive educational sessions designed to bring members up to a similar level of knowledge in key areas. Presentations covered topics such as epidemiology of breast and ovarian cancer, clinical and psycho-social aspects of breast cancer, breast cancer treatment and survival statistics, breast cancer activism, the perspective of breast cancer survivors, molecular genetics of BRCA1 and BRCA2, current and future genetic testing technologies, social and cultural perspectives on genetic testing, genetic counseling for BRCA1 and BRCA2, and genetic discrimination.

Mid-way through the year, members were asked to self-select into one of four subgroups: Medical and Social Background, Ethical Issues in Testing and Counseling, Legal and Regulatory Issues, and Implementation and Follow-Up. Subgroups met separately to begin the process of drafting sections of the white paper. Each subgroup made a presentation to and received feedback from the Working Group regarding the major issues they planned to address. As chapters were completed, they were circulated and discussed by the Working Group as a whole. Two "big picture" discussions also took place. The first was formulated around building consensus, where possible, on 5 questions:

The second "big picture" discussion concentrated on the specific recommendations that emerged from the chapters, which were consolidated into an executive summary. Members were polled on whether they agreed with each recommendation, agreed but with expressed reservations or qualifications, or disagreed. Throughout the entire Working Group process, communication took place via email and fax, so that members who were unable to attend particular meetings had the opportunity to provide input.

Major Conference

Conference Brochure Image

On November 23, 1996, the executive summary of the white paper was presented for comment to an international audience at a day-long symposia in San Francisco. This event was held in conjunction with the III World Congress of the International Association of Bioethics (IAB).

More information on the program, including links to detailed information about the speakers.

Order copies of the videotape from Stanford Cable Channel 51.

The White Paper

The 1995-96 white paper report will be published as an academic book by Cambridge University Press, and its recommendations have been submitted for publication to a major medical journal.

Executive Summary of the white paper report.

Breast Cancer Resources

Stanford Medicine Resources:

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