Misha Angrist, an assistant professor of the practice in Duke's Institute for Genome Sciences and Policy, received much attention last Fall for agreeing to make his genetic information public through the Personal Genome Project. The PGP is an effort by George Church, professor of genetics at Harvard Medical School, to collect and make public genetic information from volunteers.
During Spring Break, Angrist discussed genomics, the PGP and privacy with The Chronicle's Zachary Tracer. The interview was edited for space.
The Chronicle: Why did you decide to participate in the Personal Genome Project?
Misha Angrist: I would say there are several reasons. One is I got interested in George Church and wanted to write a book about personal genomics, and I came to the conclusion early on that it would be much more interesting to write about the Personal Genome Project from the inside than the outside. Another reason is that I have a Ph.D. in genetics and I worked in a genetics lab for a long time and I studied human genetic disease, so I was very interested to be on the other end.
TC: You've also received your genetic information from commercial services. If I want to spit into a tube and find out my genetic profile, can you recommend one?
MA: Well, you know, they're very different. Navigenics is explicitly medical. It's for people who are very attuned to their health status and their diet and that kind of stuff, as well as hobbyists.... 23andMe does have some medical info-in fact a fair amount. But unlike Navigenics, it does not offer 24/7 genetic counseling and also makes it very clear that they don't want to be in the health care business. But the fact is 23andMe also offers people ancestry info and you know, sort of what people call recreational genomics. You know-why do Brussels sprouts taste bitter to some people and not others?
TC: Have you received any of your own results from the PGP yet?
MA: That's kind of the $64 question. I have some single nucleotide polymorphism data. But I'm waiting on sequence data, and I expect to see it on the Web site at any time. It's been a long haul and there have been a lot of technical and logistical and ethical challenges.
TC: What sorts of ethical challenges?
MA: I'd say the most recent one has been about the issue of redaction. The PGP is going to work most efficiently for people who have no qualms about making their entire genomes and medical records public. I would say that was mostly true for me, but my wife and I have young daughters, and I have a family history of early-onset breast cancer. I'm not worried about anything lurking in my genome, but I have a 9-year-old and a 6-year-old, and my wife and I didn't think that if the world were to learn that they had a 50 percent chance of developing early-onset breast cancer that that was necessarily fair to them-for the rest of the world to know about that before we were ready to tell them.
TC: Does your reluctance to share your genetic information go against the ideals of the PGP?
MA: If you were to ask George Church, and he's said this to me, as have other people associated with PGP, they believe that it's good in the early stages to have people like me who are on the fence about releasing certain things, because then it presents them with this technical and social challenge of, "What do we do about this?"
TC: Are people who are publishing their entire genomes being too cavalier about it?
MA: No, not at all. I think it's an individual decision, and I think everybody has to decide what is right for them. People are getting a lot of warning and red flags-I hope they are, anyway-that once you look at all this stuff, you can't unring the bell.
TC: Should other people worry that releasing their genetic information could compromise their insurance coverage?
MA: We have this new law, the Genetic Information Nondiscrimination Act, which is going to take effect this year and next. I don't know how much teeth it has-I don't think very much. I think there are a lot of holes. It's a complicated question. Has there been much genetic discrimination? The answer is no. Now having said that, if someone is hell-bent on discriminating against someone on the basis of their DNA, it's probably not that hard to do.
Get The Chronicle straight to your inbox
Signup for our weekly newsletter. Cancel at any time.