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.
Family intrigue led Guernsey to buy his wife a DNA test kit from Ancestry DNA.
“She’s always been interested in genealogy,” he said, noting that his wife had always wondered if she was part Indian. The $99 Ancestry DNA test Guernsey bought as a Christmas present uses a saliva sample to trace family history.
“A simple test can reveal an estimate of your ethnic mix,” says the announcer in an Ancestry DNA web video. The graphic on the screen shows a percentage breakdown of ethnicities.
“Like if you’re Irish or Scandinavian, or both,” the announcer explains.
For the Guernseys, the test was supposed to be fun. But their curiosity twisted to suspicion when they read the fine print. To proceed, they would have to give Ancestry a “perpetual, royalty-free worldwide transferable license” to use their DNA. Guernsey was shocked.
“That entire phrase: ‘perpetual, royalty-free, worldwide, transferable,’ it sounds like they have left it open to do anything they want with it,” Guernsey said.
Larry was concerned that the “transferrable license” could put his family’s DNA in the hands of an insurance company -- that could later deny health coverage.
“You could get into some really weird science fiction scenarios,” he said.
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.”
If that’s the case, why do ancestry and other companies like it require a DNA license to join?
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.
Ancestry’s website advertises that it has 3 million people in its DNA registry and boasts “the world's largest consumer DNA database.” We’re unsure how lucrative that data is because the company is privately held and isn’t obligated to publicly report how much it makes from selling DNA data.
We asked Ancestry for an interview. It declined.
In a statement to NBC Bay Area Responds the company said, “We will not share DNA data with third party marketers, employers or insurance companies.”
Ancestry’s website currently tells users they have a choice to later “delete your DNA test results” or “destroy your physical DNA saliva sample.” Ancestry also says it stores users’ “DNA sample without your name.” Those statements are posted to its privacy page. However, they’re not in the contract you sign.
“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.
Larry didn’t sing up. He cancelled, because handing over his family’s DNA to find his ancestors was just too much of a risk. Who knows, he said. What happens if “five years from now ‘Evil Corp.’ decides to buy up all this genetic information?”
Professor Greely noted that DNA tests for genealogy are fairly cheap right now. Perhaps there’s a reason for that. The low price consumers pay today might be subsidized by the future sale of their DNA data.
Greely said he could foresee DNA testing companies eventually offering a pricing model that employs a sliding scale: the privacy you want, the more you pay.