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National Academies panel urges researchers to routinely share test results with study participants

Study participants share their blood and spit in the name of biomedical research. Now, a national group of experts says these volunteers should be told what scientists learn about their health from those samples.

In a report published Tuesday, an expert committee convened by the National Academies of Sciences, Engineering, and Medicine concluded that scientists and their institutions should routinely — and carefully — consider whether to return study results to participants. The report, which was sponsored by three of the leading federal health agencies, also recommends revising a federal regulation that’s caused confusion about when it’s permissible to share research findings with a participant.

"It’s really calling for a sea change in how we handle the issue of research results in studies with human specimens," said Amy Lynn McGuire, one of the report’s authors and a biomedical ethics professor at Baylor College of Medicine.

More often than not, study findings about a single participant aren’t shared. Many research institutions have long been reluctant to return test results, whether they measured cardiac enzymes or cholesterol levels or sequenced their DNA. Among the chief concerns: Participants might misinterpret their results, the data might not be well-validated, and the work to prepare individuals’ results could further strain limited resources for research.


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Michelle Maclay, Communications Director