Dr. Robert C. Green, an associate professor of medicine at Harvard, sees practical as well as ethical issues in trying to warn anonymous study subjects of disease risks. (Gretchen Ertl, The New York Times)

Dr. Arul Chinnaiyan stared at a printout of gene sequences from a man with cancer, a subject in one of his studies. There, along with the man's cancer genes, was something unexpected genes of the virus that causes AIDS.

It could have been a sign that the man was infected with HIV; the only way to tell was further testing. But Chinnaiyan, who leads the Center for Translational Pathology at the University of Michigan, was not able to suggest that to the patient, who had donated his cells on the condition that he remain anonymous.

Around the world, genetic researchers using tools that are ever more sophisticated to peer into the DNA of cells are finding things they were not looking for, including information that could make a big difference to an anonymous donor.

The question of how, when and whether to return genetic results to study subjects or their families "is one of the thorniest current challenges in clinical research," said Dr. Francis Collins, the director of the National Institutes of Health.

The federal government has made the issue a priority, spending millions of dollars on research on questions unique to this new genomics era.

Researchers are divided on what counts as an important finding. Some say it has to suggest prevention or treatment. Others say it can suggest a clinical trial or an experimental drug. Then there is the question of what to do if the genetic findings only sometimes lead to bad outcomes and there is nothing to do to prevent them.

"If you are a Ph.D. in a lab in Oklahoma and think you made a discovery using a sample from 15 years ago from a subject in California, what exactly are you supposed to do with that?" asked Dr. Robert C. Green, an associate professor of medicine at Harvard.

The rest is here:
Genetic researchers face ethical dilemna with surprise findings

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