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Duke scientist to bare his DNA: Small study has big potential but raises ethical concerns(News & Observer, The (Raleigh, NC) Via Acquire Media NewsEdge) Nov. 16--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. Angrist and the other donors in this study are considered collaborators. Because of their DNA donation and their willingness to make the results public, they have a stake in the study. In return, they can ask questions and see how their contribution benefits science. Angrist likes this approach, and his decision to take part wasn't difficult. He likes the idea of knowing how his genetic donation may affect the world of science. "When you make everyone anonymous, you impoverish the data," he said. "You may have that person's DNA, but you don't have a name or a lot of the details that you may want someday." Genome: Ultimate ID A genome is essentially an individual's unique 6 billion-letter ID number. Gene research took a huge step forward in 2003 when the Human Genome Project, a 13-year effort to sequence the entire human DNA, was successfully concluded. Since then, two pioneers in the field, James Watson and J. Craig Venter, allowed their DNA to be totally decoded and made public. The Harvard project, which is funded privately, will sequence a small fraction of each person's total genome believed to be most directly linked to behavior and disease. In Angrist's case, DNA was taken from a graft of his skin and mechanically sheared into smaller pieces; it will be put through a complicated, multistep process until the sequence is determined. Angrist's DNA sample was taken in late October, and he hopes to have his genome sequence information within weeks. Angrist, 44, is married with two young daughters. A native of Pittsburgh, he came to Duke in 2003 and works primarily in the areas of intellectual property and gene patenting. The Harvard study caught his eye for more than one reason. Intellectually, he's curious about it. But he also saw it as the perfect source material for a book he wants to write about personal genetics. Could there be a better way to do research for a book than by getting a look at the subject matter from the inside? He agreed to take part in the study after consulting with his wife, Ann, who he says sees the issues as he does. He says he never had qualms about the public nature of the Harvard study, but he has balked at one piece of it. If there's bad news ... The other nine participants have agreed to immediately make their DNA information available as soon as it has been decoded; Angrist alone stipulated that he must get a look at his first. Though he doesn't intend to hold anything back, his paternal instinct has kicked in. "In the unlikely event that that I carry a bad version of the Huntington gene, or Lou Gehrig's disease, that my daughters would be at a 50-50 risk of inheriting, I'd prefer they find out from me and my wife rather than the Internet or one of their precocious classmates," he said. "I like to think that's just being a responsible father." Angrist's reticence in this regard illustrates what some ethicists say is this Harvard study's gray area. Some argue that making DNA codes public is risky. If, for example, an insurance agency saw that Angrist carried a gene for a debilitating disease, might it deny coverage to him or a family member? And how might Angrist react to finding a gene pointing to future Alzheimer's? "That's in your 70s," Angrist said. "Something that's going to happen to me 30 years from now is not going to keep me up at night." Nancy King, who directs the Program for Bioethics, Health and Society at Wake Forest University's School of Medicine, said participants in studies like this one have a lot to think about. The study of genetics is fast becoming big business, as private companies that offer DNA decoding push the development of better and better technology. In a few years, Angrist's DNA sequence might offer even more information than it does today. And while the participants in this study are science-savvy, future donors may not be, King said, as the technology makes DNA study more affordable to ordinary people. "You have to talk about the responsibilities of science to make things clear at a level that people can grasp," she said. "We really don't know what all the worms are in the can. The openness and rapid advance of technology in this area may open up all sorts of things we don't see coming." [email protected] or 919-932-2008 To see more of The News & Observer, or to subscribe to the newspaper, go to http://www.newsobserver.com. Copyright (c) 2008, The News & Observer, Raleigh, N.C. Distributed by McClatchy-Tribune Information Services. For reprints, email [email protected], call 800-374-7985 or 847-635-6550, send a fax to 847-635-6968, or write to The Permissions Group Inc., 1247 Milwaukee Ave., Suite 303, Glenview, IL 60025, USA. |