Picking up the Sunday paper after walking the PharmBeagle, I saw Dr Misha Angrist of the Duke University Institute for Genome Sciences & Policy featured on the frontpage of the local fishwrapper. Ace higher ed reporter, Eric Ferreri, put together a lovely article on this local hero. As Misha notes elsewhere:
In 2007 I became the fourth subject in Harvard geneticist George Church’s Personal Genome Project. As the PGP moves forward, I am chronicling the dawn of personal genomics, that is, people obtaining their genomic information for whatever reason(s) and figuring out what to do with it. I am interested in the relevant technologies and especially the attendant privacy and other ethical/legal/social issues.
Not only is Misha a geneticist and bioethicist, but he is also a published writer of fiction and non-fiction (separate from his own peer-reviewed publications – I jest). He is also an excellent scholar of discerning tastes in having invited me, Sheril Kirshenbaum, and Bora Zivkovic to speak with his students in bioethics where we were humbled by no one having ever heard of ScienceBlogs.com.
Ferreri notes that Church and the PGP set out specifically to recruit subjects with a very strong interest or qualifications in science:
If successful, the Harvard study and its leader, George Church, will have built the world’s first public genome database to link genes with disease. Angrist is truly in at the ground level.
“Ten people is, statistically, not much different than zero people,” Angrist said. “We have no illusions that anything from the 10 of us will be useful. The idea is to stick our flag in the ground and see if we can make this work.”
In my view, Angrist’s participation will be of high impact is in his role as an ethicist and professional writer in that he will be able to effectively communicate to the wider public the significance (or lack thereof) of personal genomics:
James P. Evans, a genetics professor at UNC-Chapel Hill, cautions against making too much of genetic information.
Even if Angrist or one of his fellow participants learns he has the gene for a horrible disease. that is far from a guarantee that the disease will ever occur, Evans said. Even in a larger group of donors, Evans said, it would be difficult to make solid medical decisions based on what DNA shows. A woman whose DNA suggests future breast cancer, for example, shouldn’t necessarily run out and get a mastectomy.
“The information one gets is virtually all probabilistic; it’s not actionable information, medically,” he said. “To me, the biggest danger is that its utility will be exaggerated because people put this mystical value on DNA.”
Angrist is also a certified genetic counselor and, together with his bioethics expertise and writing skills, is exceedingly well-positioned to document and discuss his experience with proper perspective.
I have to admit my own fascination with this project from having my Y-chromosome SNPs quantified for National Geographic’s Genographic Project. So, I look forward to Misha’s account of his experience.
Read all of Ferreri’s article on Angrist here.
Photo credit: Ted Richardson of the Raleigh News & Observer captures Dr Angrist with the outcomes of his own genetic experimentation with Mrs/Dr Angrist: daughters Lena, 6. and Stella, 9.