DNA Test For Finding Ancestors Raises Privacy Concerns

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Publish Date:
April 28, 2017
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NBC Bay Area - Responds
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Summary

The question can’t get more personal. Can you give up the rights to your DNA data?

The answer is yes. And Larry Guernsey of San Jose knows firsthand.

We brought Larry’s concerns to Stanford law professor Hank Greely, who teaches and writes books about the intersection of biotechnology and the law. We also brought Ancestry’s contract, including the “perpetual royalty-free worldwide transferable license.”

“I think that was written by a lawyer who was probably being paid by the word,” Greely quipped. The professor then explained that a federal protection called GINA — The Genetic Information Nondiscrimination Act — safeguards the public. Your DNA cannot be used against you in employment and health insurance.

“Under current law they can’t deny you health insurance because of genetic information,” Greely said.

But Greely says that protection doesn’t apply to things like life insurance or long-term care insurance and there’s no guarantee GINA will be on the books forever. In fact, a controversial bill in Congress right now would strip away consumer-friendly parts of GINA. Still, Greely says human DNA doesn’t reveal as much as you might think.

“Our DNA, frankly, isn’t that exciting for the most part,” he said. “I’d much rather give you my DNA than my credit card records or my Google search records.”

Greely says medical researchers and pharmaceutical companies routinely need DNA data to develop new products. Companies that have big DNA databases, like Ancestry, sell it to them.

“Some of them get a fair amount of their revenue by selling the analysis of your DNA,” Greely said.

“If it bothers you, if it offends, if you’re worried about what might be in there, then you shouldn’t sign this contract,” Greely said.

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