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April 18, 2001

Protecting the Privacy of Family Members in Research

Author Affiliations

Stephen J.LurieMD, PhD, Senior EditorIndividualAuthorJody W.ZylkeMD, Contributing EditorIndividualAuthor

JAMA. 2001;285(15):1960-1963. doi:10.1001/jama.285.15.1960

To the Editor: Dr Botkin discussed whether the privacy of family members should be protected in research.1 We disagree with his proposal that family history information about psychiatric disorders should be subjected to unique restrictions. He argues that cancer, diabetes, and arthritis are "no longer considered highly sensitive conditions," but that "conditions with a behavioral or psychiatric component, such as alcoholism or schizophrenia, remain stigmatizing." He suggests that for psychiatric disorders alone, identifiable relatives must give consent before a subject reports on family history because the slight possibility of breaching the index subject's confidentiality represents more than a minimal risk to the relative.

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