Privacy Protections in Research – USA

American officials are planning to overhaul the rules that regulate research involving human subjects. But critics outside the biomedical arena warn that the proposed revisions may unintentionally create a more serious problem: sealing off vast collections of publicly available information from inspection, including census data, market research, oral histories and labor statistics.  The Oral History Association (USA warns that under the proposed revisions, for example, new revelations that Public Health Service doctors deliberately infected Guatemalan prisoners, soldiers and mental patients with syphilis in the 1940s might never have come to light. The abuses were uncovered by a historian who by chance came across notes in the archives of the University of Pittsburgh. That kind of undirected research could be forbidden under guidelines designed to prevent “data collected for one purpose” from being “used for a new purpose to which the subjects never consented,” said Linda Shopes, who helped draft the historians’ statement. The suggested changes, she said, “really threaten access to information in a democratic society.” For the full story, click here.

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