Published October 20, 2008
Ten prominent scientists, researchers and doctors are giving up a huge amount of personal privacy Monday.
Their entire genetic sequences will be posted on the Internet as part of the Personal Genome Project, a Harvard-based endeavor that aims to discover the genetic basis of hundreds of diseases, conditions and even personality quirks.
The best way to find that out, some scientists believe, is to put everything out there in the open — each participant's name, medical history, family history, ancestry, even likes and dislikes — so that links to his or her genome can be established and more effective treatments and drugs can be developed as a result.
"We're treating people like one size fits all, like anybody can work in an asbestos factory, anybody can eat peanuts, anybody can take this new antibiotic. It's just not true," Harvard geneticist George Church, a founder and leader of the PGP and one of the people whose genome will be released Monday, tells the Washington Post.
But privacy advocates and medical-ethics experts don't like this approach.
"I'm concerned that this could make it seem easy and cool to put your information out there when there is still a lot of stigma associated with certain genetic traits," Kathy Hudson, head of the Genetics and Public Policy Center at Johns Hopkins University, tells the New York Times. "There will be new uses of this data that people can't anticipate — and they can't do anything to get it back."
Whatever the dilemmas, Church hopes to soon drastically expand the program. He's asking for 100,000 volunteers who would be willing to give up their privacy in exchange for having their entire genomes sequenced.