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October 26, 2011—SAA responded today to a Department of Health and Human Services (HHS) advance notice of proposed rulemaking regarding “Human Subjects Research Protections: Enhancing Protections for Research Subjects and Reducing Burden, Delay, and Ambiguity for Investigators” (HHS-OPHS-2011-00-5).
Following consultation with the Oral History Section and the Issues and Advocacy, Privacy and Confidentiality, and Science, Technology, and Health Care roundtables, SAA President Gregor Trinkaus-Randall filed with HHS an official comment noting that, for example, “We believe that information once held as intensely private can, after sufficient time, legitimately support intellectual inquiry for the overall advancement of human knowledge. Census records, adoption records (in most states), and other extremely private data have long been accessible after the subject’s death. In the case of medical information, it may be that longer restriction, perhaps even through two generations, is appropriate. However, permanently preventing even name-linked research is ultimately indefensible.”
Read SAA’s complete comment here.
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