We know that our DNA is uniquely ours, but do we really own our own genetic information? In biobanks across the country, researchers store millions of genetic samples taken from patients – sometimes without their knowledge – and there are no clear guidelines on how to deal with the tissues and findings.
What obligation do these researchers have to return samples – and any unexpected findings from the samples – to patients and their families?Susan Wolf, McKnight presidential professor of law, medicine and public policy at the University of Minnesota, has a report discussing 10 suggestions for biobanks and individual research findings. The paper will appear in Genetics in Medicine.
“The work we’re doing now focuses on whether researchers have any responsibility to offer back to research participants genetic findings that may have immediate, health affecting results,” she said. “It’s a terribly important issue – really it’s the biggest controversy in genetic research today.”