The following is a guest blog entry by Marcy Darnovsky of the Center for Genetics and Society.
To read The Spitterati and Trickle-Down Genomics Part 1, click here.
Efforts by California and Massachusetts to assert regulatory oversight of direct-to-consumer gene testing companies elicited predictable howls in the libertarian-leaning regions of the blogosphere. The gist of the don’t-tread-on-me argument: Those are my DNA sequences; keep your hands off.
23andMe understands this impulse, and appeals to it. On the “values” page of its website, for example, it says, “We believe that your genetic information should be controlled by you….Though we store and help you interpret it, your genetic information is yours to have and explore.”
Well, sort of. What the company doesn’t quite come out and say is that its real business plan isn’t selling spit kits or interpreting DNA tests, but compiling vast databases of genetic and phenotypic information that it can sell to researchers at drug companies. In other words, there’s gold in them thar genes, and Google, other investors, and the consumer genetics sector are laying their stakes to it. But though this entire enterprise depends on the results of the government-funded Human Genome Project and is likely to have significant social consequences, regulators are supposed to back off.
And the people who pay hundreds or thousands of dollars for the freedom to contribute their DNA samples? They’ll have no claim or control. Buried in the New York Times account is the detail that while purchasers can choose not to participate in the company’s survey about their phenotypic traits, they “cannot opt out of having their information anonymously shared” with researchers.
The direct-to-consumer genomics industry isn’t the first to make its customers part of its product. Media companies, for example, earn most of their money by delivering audiences to advertisers. But while you can turn the page or close the pop-up window to avoid ads and commercials, 23andMe won’t let you take your genetic information out of the massive DNA databases it plans to build.
There may be even more to worry about. The consumer genomics enterprise raises additional concerns that are more subtle, and perhaps more troubling. Will 23andMe-type gene tests reinforce exaggerated ideas about the role of DNA in who we are as individuals and how we see each other? Will they change the way we arrange our communities and our society?
The answers to these questions, like the results of today’s gene tests, are blurry. Unsurprisingly, 23andMe co-founder Anne Wojcicki (who is married to Google’s Sergey Brin) sees a rosy future: “We envision a new type of community where people will come together around specific genotypes, and these artificial barriers of country and race will start to break down.” Along similar lines, the company’s press release announcing its recent price cut described the move as a way to “democratize personal genetics.”
But where boosters see barriers of country and race tumbling down, others see new—or revived—hurdles to social justice. Without careful handling, the new genetic tests could easily stoke tendencies to explain our health—and our social and health disparities—in terms of inherited biology, rather than access to education, housing, and health care.
As the director of the National Human Genome Research Institute from 1993 until earlier this year, Francis Collins is in a good position to assess these matters. “I very much worry that all this emphasis on a ‘gene for this’ and ‘gene for that’ raises the risk that people will conclude that that’s the whole story,” he told the Washington Post in March. The front-page article described Collins’ concern that gene tests will encourage “the kind of DNA-deterministic thinking that fed the early 20th-century eugenics movement, in which people with `undesirable’ traits underwent forced sterilizations.”
Personalized medicine may well hold promise for future benefits in health care. But its positive potentials—and the good intentions of many trying to develop it—aren’t the whole story. The direct-to-consumer genetic testing industry is harnessing its plans to high-tech glitter and Google’s clout, and hurtling ahead with little consideration of the social policies and oversight we need.
So for now, we’d best be careful where we spit.