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Geneticist on DNA privacy: Make it so people don't care

January 18, 2013|By Eryn Brown
  • DNA privacy can't be assured, a leading geneticist says, arguing that instead of promising anonymity, researchers should convince study subjects that they shouldn't care so much about privacy.
DNA privacy can't be assured, a leading geneticist says, arguing… (Darryl Leja / NHGRI )

Worried that your genetic information could be revealed?  You should be, says Harvard geneticist George Church. 

But it doesn't have to keep you from participating in genetic studies.

DNA privacy has been a subject of concern this week, as a team of geneticists reported Thursday in the journal Science that it was able to figure out the names of people who had donated their DNA to research -- even though test subjects' identities were stripped from their genomic data.

Using information posted to genealogy websites and other publicly available Internet resources, the Whitehead Institute researchers were able to ferret out the names of nearly 50 people, suggesting that it may be easier than many had previously believed for a motivated hacker to match a test subject's DNA to his or her identity.

"Nobody can promise privacy," one scientist who wasn't involved with the study told the Los Angeles Times. (Our coverage of the report is available through the related story links at left.) 

Church, who runs a sequencing research effort called the Personal Genome Project, agreed fully, saying it would only get easier to identify people as technologies improved.  Someday, he said, we will be able to learn about our ancestry or the diseases we may get from a smudge of DNA we've left on a coffee cup, or a strand of our hair. "Everyone leaves their DNA around," he added.

But that's no reason for anyone -- researchers, subjects or family tree hobbyists -- to avoid sharing their DNA with the world, he told The Times.  Church says that medical researchers, who depend on large public genome databases to investigate how genes influence disease and other key scientific questions, ought to embrace the new reality, "jump to the endgame ... admit that it's very challenging to promise anonymity, and make it so that people don't care about it." 

In Church's project, he said, participants sign consent forms that suggest that it's likely they'll be identified.  As a result, he said, many of the volunteers self-identify, choosing not to wait "for a hacker to do it for them."  Church said that being out in the open makes many more active participants in his project willing to attend annual meetings to discuss their genomes and understand the insights the DNA is helping to reveal.  Bloomberg reporter John Lauerman, for example, wrote about his own experiences with the Personal Genome Project last year.

The best plan "is to educate the population and recruit them in an honest and transparent way," Church said.

He compared our DNA to another part of biology that is always on display.

"We're at a juncture. It's as if we're deciding if we're going to show our faces or not.  Faces are very revealing.  They show our emotional state, our health state, if we're asleep or bored, our ancestry," he said. "I think we haven't decided if the genome is like our faces or not."


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