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for a while. What’s happened?
GC: My medical records have been out since 1999. My genome has been out since earlier this year.
It’s still early days. The 10 members of the Personal Genome Project have their genomes and medical records online, and we find things. For example, one of them has a potential predisposition to hypertrophic cardiomyopathy. It’s not something where you’d ordinarily walk into a doctor’s office and say, ‘hey, test me for that, because gee, I’m feeling a little hypertrophic cardiomyopathy coming on today.’ The way you find out is you drop dead during sports or exercise. That’s kind of too late. So he’s going to be sure to get a checkout now.
Now, the Personal Genome Project is not only about delivering diagnostics, like in that case. We feel responsible, because if we turn something up, we should let them know. That sort of thing will greatly expand with time as we learn more.
X: Has there been any downside? Have any of your concerns about putting this data out in the open been confirmed, or maybe assuaged?
GC: One thing that’s happened since we put it up is the Genetic Information Non-Discrimination Act has passed. The downsides that we were worried about were that maybe people would over-interpret it. They might say ‘Gee, you have a gene here for silliness, or Machiavellianism,’ or something like that. If you were running for office, it might take a while to convince an uninformed public that people who make claims like this don’t know what they’re talking about.
We weren’t really worried about it happening right away. It’s not really an attractive honeypot to attract people who want to abuse it. To a large extent, I wasn’t that worried, and I think that’s true of a lot of the volunteers we have so far. We could be wrong. We certainly go to great extremes on our website, and the consent form, and the tests people take, to walk them through potential scenarios. I think most people who sign up recognize that they’re just scenarios and they’re actually fairly unlikely. There’s lower risk here than say, volunteering to join the armed services, or going into space flight, or driving a car, that a lot of people do anyway.
X: Is there something the President could do on this project to help? Have you talked to him about this?
GC: I have talked to his staff, when he was a Senator. He had a great, surprisingly good staff, a PhD and an MD, who were really on top of healthcare issues and genomics issues. He’s got all kinds of problems [to deal with], but he’s in a great position to make fundamental changes. He’s got a great science staff now, one of the best in the history of the United States. I know there’s some bills coming up to support health research.
I think there’s a movement that he could support for specifically targeting personalized medicine. It will happen anyway, but it would be nice if he got behind it. Basically, what we’re looking for now from an economic standpoint is something comparable to what happened in the Clinton Administration. They started out, the economy wasn’t so great. Because of the computing, and Internet revolution, things turned out great. There was a budget surplus. That could happen again this time around. It’s probably not going to be computers and the Internet again, this time it’s probably going to be biotech and medical genetics.
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