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An Interview with Sandra Soo-Jin Lee on Direct-to-Consumer Genomics and Social Networking

social networking site profile with picture of DNA and the name Me SOURCE: iStockphoto Will access to our own genetic information make us healthier? That's the idea, but there's a lot to learn as we share and interpret it. Meanwhile, questions remain about proper oversight of an industry that blurs the line between consumer and research participant.
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Sandra Soo-Jin Lee talks with Managing Editor Andrew Pratt About Direct-to-Consumer Genetic Testing:

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Spit in a cup, send it off, and get your genetic profile delivered to your inbox. Direct-to-consumer genetic testing is that simple, right? Maybe, but understanding what it means is far more complex, says bioethicist Sandra Soo-Jin Lee, because much of the research on the connections between our DNA and our health remains uncertain.

But even if the genome-wide association studies that form the basis for these genetic profiles are imprecise, don’t consumers still have a right to know about their own genes? Should they expect a certain level of validity for information they’re buying? For the moment DTC genetic testing falls, in Lee’s words, in a “regulatory no-man’s land, with little oversight by federal agencies.” And the question remains, do we need health professionals act as gatekeepers and help interpret this new information?

Lee, a medical anthropologist who works as a senior research scholar at the Stanford Center for Biomedical Ethics, and her colleague LaVera Crawley, examined the expanding DTC industry and its implications for consumer health and privacy in an article that appears in the current issue of the American Journal of Bioethics.

Learning about the genes that give you brown eyes or make you lactose intolerant is one thing, but some services offer the ability to share your data with others through social networking tools. And not all genetic information is personal. “One of the special qualities of genetic information,” explains Lee, “is that it is information about the primary user; but it also information about others who may not have consented or agreed to have that information shared with other individuals.” For instance, a heritable trait increasing risk for breast cancer has implications for the person getting tested, as well as their children and grandchildren.

The Genetic Information Non-discrimination Act passed last year promises to protect citizens who might face unfair treatment on account of their DNA, but Lee warns that it’s also not yet clear how the legislation will treat the data shared through these social networks. And once an individual has made the decision to put information out there, it’s very hard to take it back.

Finally, some of these companies are taking consumer-generated genetic information and building commercial databases for research use. The vendors do require consent for this, but Lee says the process is hard to evaluate because in traditional clinical trials, scientists are required to make explicit all the potential uses of personal information. But because this sort of genetic research is still growing, it’s hard to say just what those future uses might be, so it constitutes what Lee calls a form of “open consent.”

So with these exciting new services comes a blurring of the line between consumer and research participant. This creates a tension, Lee says, between policies that allow people who want to actively participate in research to do so while still protecting people who may become unwitting research subjects. “Finessing this balance will be a central challenge as direct-to-consumer genomics expands,” she says.

And as with any expensive technology, there is a concern that the benefits may only be available to those that can afford it, as DTC tests currently run from a few hundred to a few thousand dollars. Yet the bigger divide, Lee suggests, may not be access to sequence information, but access to educational and interpretive information about genetic risk factors—for patients, consumers, and heath care providers alike.

Andrew Plemmons Pratt is the managing editor of Science Progress.

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