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http://health.usnews.com/articles/health/2008/10/20/sharing-your-personal-genetic-map-with-the-world.html
Sharing Your Personal Genetic Map With the World
Leading by example, a Harvard professor urges 10,000 volunteers to expose their genomes
By Nancy Shute
Posted October 20, 2008
Facebook 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 10,000 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."
Sharing Your Personal Genetic Map With the World
Leading by example, a Harvard professor urges 10,000 volunteers to expose their genomes
By Nancy Shute
Posted October 20, 2008
Facebook 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 10,000 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."
