Privacy in genetic testing: why women are different.

Two years ago, I attended an international conference on genetic testing in Rennes, France, where one panel was scheduled to discuss privacy and genetic testing. The specific topic was whether family members ought to have access to an individual’s test results. My assumption, an admittedly naïve and ill-informed one, was that no one, including family members, had any right to this information. Even more naïve and ill-formed was my second assumption: that the first assumption was shared and universal. I was shocked, therefore, when one of the presenters articulated a position in favor of physicians’ sharing an individual’s test results with family members. His views were quickly echoed by a member of the audience who identified himself as a physician from Canada. When the time came for questions from the participants, I asked whether anyone other than me had concerns about the privacy rights of individuals, and whether there was any recognition by the speakers of their own, perhaps questionable, assumptions about families being benign and loving entities. The response I received was a question: Was I an American? When I responded that I was, the explanation for my position seemed evident to everyone. Americans have an intense interest and concern for privacy, presumably in ways that non-Americans do not. I could not argue with this observation about American culture and jurisprudence, still I left the conference with a great deal of unease. Even within my own United States, I realized that I knew little about a physician’s duty of confidentiality and that the law on the issue was scarce. I also found myself questioning what I perceived to be the gendered nature of the debate, particularly the notion that individuals would have little to fear from families’ knowledge of their genetic status. In my gut, I wondered if that were true for women.