Duke scientist to bare his DNA

Small study has big potential but raises ethical concerns

DURHAM -- Here's some personal information about Misha Angrist: His blood pressure is 104 over 65. He weighs 173 pounds, has fought anxiety and depression and is very allergic to cats.

And those are some of the mild details Angrist, a Duke geneticist, has made public on the Internet. One day soon, Angrist may find out he has the gene that raises the risk for Alzheimer's disease. Or cancer. Or Lou Gehrig's disease. When he knows these details, you can, too.

Angrist is one of 10 participants in a new, well-publicized Harvard Medical School study that its proponents say will significantly change the way genetic research is conducted.

The reason: Angrist and his fellow test subjects have agreed to lay themselves bare for the world, genetically speaking.

Along with such personal information as allergies, height and weight -- known as phenotypes -- each participant's DNA will be decoded and made public on the Harvard project's Web site. It may look like a long line of gobbledygook to most folks, but to some researchers, it's a road map of staggering potential.

Angrist doesn't mind being a public guinea pig for the world's geneticists. He shrugs off ethicists' concerns about how technology and commercialization of DNA sequencing might change the way his information could be used a decade from now.

"Americans are notoriously hung up on privacy, and I get that," he said. "[But] I don't think that information is toxic."

Still, he has reluctantly asked to review his sequenced data before it goes public, lest something dramatic trickle out to family members before he can tell them.

Geneticists are accustomed to working with DNA strands from anonymous donors. This new method of research may allow science to more closely link genes with lifestyle and physical characteristics. The Harvard project ultimately hopes to enroll 100,000 participants.

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."

Ethical, moral qualms

Though Angrist and other advocates of this approach see a new avenue to scientific discovery, others raise ethical and moral questions about putting such personal information out there for the world to see.

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."

As a geneticist, Angrist thoroughly understands what he has undertaken. The study required that all 10 participants have extensive knowledge of genetics. The study's leaders wanted donors with an interest in the science, another departure from the usual research process, in which samples are taken from random donors.