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Don't Have To, But Can

Researchers aren't obligated to return research results to the relatives of deceased study participants, Robert Green from Brigham and Women's Hospital writes in a blog post at the Huffington Post. However, Green adds that researchers may do so, if they so choose.

He and a group of colleagues developed a set of recommendations, published last year in the Journal of Law, Medicine, & Ethics, to guide researchers grappling with such questions. He writes at HuffPo that those recommendations can be broadly described as: "1. Find out what the participant's preferences are. 2. Follow them."

Green notes that it isn't quite that easy. He says that it means that participants need to be asked about whether they'd want their results given to their relatives and perhaps asking them to choose someone to act as their representative if they cannot.

Still, Green and his colleagues suggest a passive role for researchers in giving such information to participants' relatives — to do so when the relatives seek them out and not the reverse. His group, though, was split on seeking relatives out to report medically actionable variants that are quite likely to cause harm.

"But if a participant's relatives want the information, the researchers have a plan for how to share it, and the participant has consented, researchers may be ethically justified in sharing genomic research results with a participant's relatives," Green writes.