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To Inform or Not, To Know or Not

Researchers sometimes uncover concerning genetic mutations among DNA samples provided to a biobank, raising the question of whether they should inform the donor, the New York Times writes.

It reports that some biobanks like the Mass General Brigham Biobank do reach out to see if the participant wants to know of a such a variant when there is an intervention to reduce disease risk. The Times notes, though, that some participants want to know, but others don't. For instance, it reports that Marin Konstadt declined to learn more when the Mass General Brigham Biobank contacted her, but that Jacques Fatal was glad to learn he had Lynch Syndrome and has since undergoing screening.

The Times notes that not all biobanks do inform donors of worrisome genetic variants, which the University of Chicago's Lainie Friedman Ross says is fitting as there is a difference between research and medicine. Harvard's Robert Green, however, argues there is an increasing sense of an "ethical responsibility and a legal liability" to try to disclose information that could affect someone's health.

"These are important pieces of information that can be lifesaving," the National Institutes of Health's Benjamin Berkman adds.