In DepthClinical Trials

Unexpected revelations for study volunteer

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Science  13 May 2016:
Vol. 352, Issue 6287, pp. 754-755
DOI: 10.1126/science.352.6287.754

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Summary

About 5 years ago, psychologist Rita Woidislawsky joined a research study studying people with naturally elevated high-density lipoprotein (HDL) cholesterol, sometimes called "good" cholesterol. Like millions of volunteers who give blood and a few hours of their time to scientists, the project had barely registered on her radar recently. And then last month came a startling discovery. After a chance encounter with the lead scientist, she learned that the research group had published a paper in Science in which her case figured prominently (although only her age at the time of most data collection was listed). The news alarmed her: Researchers suspected that rather than being beneficial, the high HDL Woidislawsky had always been proud of might be deleterious. She had known nothing about the publication plans or her own results. The experience places Woidislawsky at the nexus of two distinct quandaries in clinical research: What health information do researchers owe the volunteers in their studies, especially when it's not clear what it means? And should researchers notify volunteers of publications in which their story appears, even if it's impossible for others to identify them?