A good discussion about some of the ethical issues around returning genetic results to people who donated their samples for research purposes on an anonymous basis, when these results can be significant in terms of medical treatment or not. Quote:
Dr. Petersen, along with Barbara Koenig, a professor of medical anthropology and bioethics at the University of California, San Francisco, and Susan M. Wolf, a professor of law, medicine and public policy at the University of Minnesota, got a federal grant to study the effects of offering to return the genetic results to the families of those 73 patients. The questions involved are tricky, Dr. Koenig said. Finding patients and their families can be expensive, and labs do not have money set aside for it. How would you find them? Even if they were found, whom would you tell? What if there had been a divorce, or if family members were estranged?
“My gut feeling is that there is a moral obligation to return results,” Dr. Koenig said. “But that comes at an enormous cost. If you were in a study 20 years ago, where does my obligation end?”