I’ll Show You My Genome. Will You Show Me Yours?
A quote by Professor of law Hank Greely, given to the Washington Post in May, is featured in this Reason article by Ronald Bailey. In it, Greely explains regulating access to genetic tests:
Michael Cariaso, developer of the human genetics wiki SNPedia and the online gene analysis tool Promethease, has helped thousands of people unlock the secrets of their own genetic code. But when it comes to making his own gene screening tests publicly available for all the world to see, Cariaso prefers to hold the key close to his vest, worrying that such transparency might lead to personal embarrassment or discrimination by insurance companies or future employers. “Someone later might discover,” he says, “that I have genes for a short penis and low intelligence.”
Cariaso is certainly a smart guy, and he is hardly alone in his general concerns. (With regard to his genitalia, as the philosopher Wittgenstein said, “Whereof one cannot speak, thereof one must be silent.”) But he’s wrong. Fears about the loss of genetic privacy are greatly exaggerated. We are fast approaching an era in which genetic information is no longer exclusive or medicalized. Instead, as screening costs plummet and our knowledge about genetics expands, virtually everyone will soon be able to have their genotypes at their fingertips. Knowing and sharing that information will enhance, not jeopardize, our sense of ourselves, change the way we consume medicine and plan for the future, and influence how we relate to each other.
Back in 1999, as APOE testing was becoming more widely available, a panel of bioethicists convened at Stanford University concluded that Alzheimer’s testing was inappropriate for most individuals. The bioethicists were concerned about the “impact of knowing one’s own genetic susceptibility to an incurable disease.” In particular, they were afraid that consumers would “make significant life decisions based on a misunderstanding of risk estimates.” They also feared that insurance companies might use such test results to discriminate against people in issuing and setting rates for health and life coverage.
Nevertheless, genetic information is complicated; many customers are likely to misunderstand some of it. For some bioethicists, the solution is to keep consumers ignorant by banning or at least strictly regulating access to genetic tests. Hank Greely, director of Stanford’s Center for Law and the Biosciences, told The Washington Post in May that offering Pathway Genomics tests on drugstore shelves is “reckless.” While “information is powerful,” he said, “misunderstood information can be powerfully bad.”