May 12, 2016
(Science) – She was also, I realized, 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 whether or how to act on it? And should researchers notify volunteers of publications in which their individual story is chronicled, even if it’s impossible for others to identify them from what’s written? Woidislawsky’s experience shows that “the risks of publishing information about people are not just privacy,” says Christine Grady, chief of the bioethics department at the National Institutes of Health Clinical Center in Bethesda, Maryland. “They might learn something about themselves that they didn’t know.”
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.