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Your DNA Is A snitch

Publication Date: 
February 17, 2009
Peter Dizikes

Professor Henry T. "Hank" Greely is quoted in in a story about the development of new genetic testing technolgies that can provide consumers with their DNA profiles and the medical risks or illness associated with them. Greely discusses the privacy issues that surround storing that information:

Your DNA is a set of bodily instructions, a catalog of our evolutionary past and a personal warning label about your health risks. It is also a secret. No one knows what your DNA says.


That's a question looming larger in American life as genetic testing becomes a mainstream activity. Time named direct-to-consumer DNA exams its Invention of the Year for 2008, following the emergence of companies like 23andMe and Navigenics, which report on your genetic risk of illnesses such as prostate cancer or Parkinson's. Academic medical research efforts like Harvard's Personal Genome Project aim to study the DNA of volunteers, hoping to find genetic links to diseases. So do healthcare providers: In December, California-based Kaiser Permanente announced plans to study the DNA of 400,000 members.


What's not to like? Well, your DNA can leak into the public arena. Institutions can suffer privacy lapses. In 2005, Kaiser Permanente, the same provider now starting its DNA database, was fined $200,000 by the state of California for allowing lab results concerning 150 patients to be accessible on the Web. And once your data is stored in computers, that creates more "low-tech ways that privacy can be lost," explains Stanford law professor Henry Greely, a skeptic about genetic privacy. "Laptops get stolen. Drives get stolen or lost."


The same uncertainties apply to labs practicing covert genetic testing -- in which, for instance, spouses with paternity or infidelity concerns will send another person's DNA to be tested. "I don't think people realize how much DNA we leave around every day," Greely says. "There is a possibility that if somebody cared, they could get a sample and sequence by following you around." You might leave enough DNA for a test in a glass at a restaurant or office cafeteria.


It's for these reasons that the Personal Genome Project essentially tells its volunteers to forget about privacy guarantees. "I like the Personal Genome Project approach," Greely says. "It's honest. They're saying, 'If you want to take the risks, great.'"


This is the seeming paradox of DNA: The better we understand our genes, the less important we might find them. "People believe in the magic of genes, and buy into the idea that they are the deepest secrets of our being," Greely says. "Whereas maybe my credit card records come closer to being a deep secret of my being."


Still, perhaps the highly personal nature of DNA testing will help us form more supple genetic ideas. "The public is set in an older, more determinative view of genes," Greely says. But as we learn more, he suggests, "it's entirely conceivable we'll see genes as independent risk-enhancing or limiting factors, but not particularly important in and of themselves." Surely we're capable of recognizing the complexity of our bodies and realizing that our inclinations, abilities and health are all heavily dependent on the nature of our contact with the world.