Patient Advocates Join Cancer Genetics Network
By Margaret Borwhat, BA

At the first steering committee meeting of the Cancer Genetics Network (CGN) in 1998, members decided it was important to include the voice of a patient advocate. Barbara Parker of the North Carolina affiliate of Patient Advocates in Research (PAIR) attended the second meeting and added a patient's perspective to the research discussions and planning.

Recently, additional advocates were invited to participate: Susan Butler is a member of the Ovarian Cancer National Alliance and serves on the National Cancer Institute Director's Consumer Liaison Group; James Williams is a member of US TOO International and the Intercultural Cancer Council; and Margaret Borwhat joins CGN from the Women's Cancer Advocacy Network and is a member of the National Action Plan for Breast Cancer, Consumer Involvement Working Group. They speak not only from their own experiences of having been diagnosed with cancer but also for the many patients and their families with whom they have spoken in their leadership roles at their respective advocacy organizations.

CGN is comprised of institutions that specialize in the study of genetic susceptibility to cancer. Research priorities include gene discovery and characterization, modifier genes, common polymorphisms, and gene-environment interactions. In addition, CGN supports studies in counseling and education, prevention and risk reduction, behavior, ethics, and cost effectiveness. Advocates may help build the trust of potential participants and their families and address public misconceptions and fear of "gene research." Because CGN institutions share a common infrastructure, one of its strengths is that it can pool information, including biospecimens, from more than one site. Advocates can articulate the concerns of patients, survivors, and potential participants and help prepare reassuring responses about maintaining confidentiality with the transfer of genetic information. This is particularly important with CGN's emphasis on prospective studies. Advocacy organizations have been highly influential in publicizing clinical trials, which can help identify and recruit new populations, a goal of CGN.

At CGN meetings, advocates strive to make patients and potential research participants more understood which facilitates counseling and behavioral studies. Advocates also raise issues and stimulate discussion that may lead to research.

Advocates have effectively informed policy makers about cancer research and have been instrumental in acquiring increased funding. CGN advocates and their organizations may be particularly effective in explaining the need for cancer genetics research from their personal experiences of cancer and convey the strengths of sharing resources and expertise. Consumers have and will continue to seek legislative protection from genetic discrimination that will ease the concerns of potential participants in genetic research and testing.

In the future, CGN plans to recruit various other advocates who will be able to contribute to committees and working groups, help review proposals, and evaluate informed consent and educational materials. In addition, a few of the eight CGN centers are involving local patient advocates in their discussions and planning. Barbara Parker, steering committee member and advocate, believes, "This research enterprise cannot help but be enhanced by the involvement of people with the experience or risk of cancer."