Many of us would be delighted to contribute to medical advances. But handing over reams of our genetic, health and personal information to companies like 23andMe – and paying them for the privilege – isn’t the best way to do that. And it’s far from the only path to scientific advance.
23andMe is a commercial enterprise. Its business model depends on packaging and reselling its customers’ genetic data and other information. Earlier this year, 23andMe announced the first two of a number of deals with pharmaceutical and biotech corporations, including some of the largest in those sectors.
Is that what purchasers of the company’s spit kits had in mind when they read the consent document that begins, “23andMe aims to make and support scientific discoveries and publish those discoveries in scientific journals?”
But once you part with your genetic information, there can’t be guarantees of privacy and anonymity, as 23andMe’s consent document acknowledges. And while a 2008 law prohibits health insurance companies and employers from discrimination based on genetic information, the law does not cover disability, life or long-term care insurance. Breaches could affect not just you, but your relatives as well.
Oversight of how genetic data is used is another issue. The F.D.A. has oversight of what kind of health information direct-to-consumer genetic companies provide, but they don't look at how data from those tests is managed or used. Once your genetic information has been sold, you have no control over what’s done with it.
There are other models for collecting and studying genetic information. Databases managed by non-profit entities or government agencies, in which commercial dynamics aren’t paramount, are more likely to manage data – and any research results flowing from it – with the public interest in mind. One innovative proposal envisions genetic databases that are legally structured like charitable trusts, with mechanisms to allow the D.N.A donors to participate in their governance.
This wouldn’t eliminate challenges related to privacy, truly informed consent, accountability or the extent to which we want to center medical research and health care on our D.N.A. But in a non-commercial context, a genetic database could be seen and managed as both a scientific resource and a public trust.
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