If you volunteer for Harvard Medical School professor George Church’s Personal Genome Project, you’d better be ready to have your full medical records along with your full gene sequence (once completed) made public. But why would anyone want that kind of exposure? Famous venture capitalist Esther Dyson explained her reasons for being one of Church’s first ten volunteers last week at Fortune’s first iMeme conference in San Francisco.
Church (who is also an Xconomist) hopes to gather enough data from the project to speed research into the links between gene variations and both common and rare human diseases, and to accelerate progress toward more individualized health care based on patients’ genetic profiles. Dyson’s reasons for participating dovetail with Church’s vision:
• She hopes that even with just 10 participants, the project will begin to generate some interesting data.
• She hopes to prove that “doing this isn’t nutty… Putting your genome up [online] isn’t the equivalent of putting up a virtual voodoo doll that people can stick pins in.”
• She wants “to ask why”—to find the genetic explanations for our appearances, behaviors, and illnesses.
Dyson, who sits on the board of West Coast personal genetics startup 23andMe, admits that it’s luck, in part, that’s allowing her to take part in the study. Her boss can’t fire her because she has a “weird gene,” and even if she loses her health insurance, she has the financial wherewithal to cope, she explained.
Ultimately, Dyson says, she hopes the choice the high-profile “first 10” have made will help push society to figure out the implications of so much genetic information becoming available—publicly or privately.
Conference video of Dyson’s (very short) talk: http://money.cnn.com/magazines/fortune/techconference/2007/.
