Technology visionary Esther Dyson offers up a “ Full Disclosure ” about her motivation to participate in the Personal Genome Project in today’s WSJ. Along with 9 other science-savvy people, Ether will have her genome sequenced and made public — along with personal health and behavioral information to help put that genetic data into context.
Why expose yourself publicly to achieve a scientific goal, some may ask? Adding faces and high-profile personalities does provide for thoughtful pioneering discussion from experts-as-participants, as Dyson points out. And no doubt it’s a lot sexier to the media and the general public. These 10 individuals are not only pioneering the discussion but they’re helping to engage the larger, lay public in this discourse.
I don’t have any deep secrets or vulnerabilities that would embarrass or create risks for myself, or for relatives who share my genes. … But what about the people who are less fortunate than me? I want to push questions about those less lucky to the fore — and get us all to think about them. It’s not just who gets health care and how it gets paid for, or whether employers can discriminate against people with certain conditions or just a greater-than-average propensity for them. What of someone who has a particular susceptibility to, say, alcohol? Does he pay an extra tax on booze? Or does he get a tax credit for behaving well, while a less susceptible person is denied the opportunity to benefit by behaving “properly”? (Subsidies and penalties cut both ways.) Should people have the right to refuse subsidized medical care and live as they wish? These questions may sound far-fetched, but they won’t be once society knows enough information to start asking them.
Over at Epidemix, Thomas Goetz raises the question, “When people agree to donate their body to science, will their genome be part of the deal? And will that make people even less inclined to donate?”
My question is one that comes out of Esther’s observations about the limits of a research study. (”But if someone has a marker indicating a possibility, not a certainty, of some condition, what should the project do?) One you’ve got your personal genome, who’s going to make sense of it?
Jason says his head is spinning looking at the data of one person’s genome. No doubt graphics and tools are one part of the equation necessary to grapple with the enormity of personal genome data. But it’s all beautiful noise until we can make it useful: medical interpretation, editorial translation, and risk-counseling expertise will be the keys to integrating personal genomes into our lives.
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on Wednesday, July 25th, 2007 at 11:15 am and is filed under Human Genome.
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