HealthLawProf Blog

Editor: Katharine Van Tassel
Concordia University School of Law

Sunday, October 26, 2008

Is Going Public with your DNA too Revealing?

US News discusses an interesting initiative by Harvard professor, George Church, called the Personal Genome Project, which seeks 100,000 volunteers to publish their genomes online in an attempt to advance science.  Although commendable, these volunteers, however, could potentially waive their privacy rights, find it harder to get health insurance, and suffer discrimination.  Nancy Shute writes,

Wwwhealthusnewscom_dnaFacebook has nothing on George Church when it comes to sharing sensitive personal details. This Harvard Medical School genetics professor happily posts his family medical history and ailments (narcolepsy, motion sickness) on the Web—and he's telling the world just what's in his DNA. As one of the first 10 people to publish their genomes online, Church hopes to make the point that sharing genes on the Internet can advance science further than the current system, in which DNA databases are protected from public scrutiny and individuals aren't identified.

In the same way that you have amateur astronomers who help track celestial events, we hope to inspire a whole generation of 'amateur geneticists' to mine DNA sequences," Church says. His Personal Genome Project is recruiting 100,000 volunteers who would be willing to tell all for science, and signed up 10 scientists, who presumably know enough to understand the potential risks of doing so, to be the first guinea pigs. Their genetic data was to be released October 20.

The notion is that linking genetic data and extensive personal information—traits such as height, weight, ethnic background, or a fondness for cheeseburgers—will make it easier to advance research on the genetic basis of diseases such as cancer and heart disease, which have so far eluded discovery. To protect privacy, most genetic databases that researchers mine to unearth keys to our individual idiosyncrasies have been stripped of that kind of personal data, or phenotype, and family histories. Another very 21st-century notion is that making the information open to all increases the odds of collaboration and speeds discovery—a scientific Wikipedia.

But genetic oversharing could be dangerous, Church admits. Participants could find it harder to get health insurance or might suffer discrimination if their genes show they're likely to get a serious disease. "Some of them know they're going to get hurt, like astronauts and mountain climbers," Church says. "But if enough of them see a benefit to themselves, their families, and society, then it will keep growing."

Want to peek into your own DNA? More and more companies are eager to help you try. Options include: Ancestry testing that links to genealogical records, combined with a social-networking website. $149 to $199. Ancestry testing, with the option of personalized genealogical research. $189 to $1,077. Genetic scan with health risk, ancestry, and sharing. $985. Genetic scan that calculates health risks and ancestry, and allows sharing with friends and family. $399. Scans genes to assess relative health risks, with access to genetic counselors. $2,500. Sequence your whole genome—all 3 billion base pairs and 25,000 genes—for $350,000. The Personal Genome Project aims to recruit 100,000 people willing to share their genes and medical history with the world. It was to start publishing information on donors on October 20. Cost is expected to run $1,000 to $2,000.

Medical genetic tests are also available online—even paternity tests—but are largely unregulated. U.S. News tested some of the more heavily marketed genetic tests and found their quality and reliability vary wildly—even if you try, as we did, to find out if a beloved dog has a genetic propensity for macular degeneration.

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