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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


Copyright 2001 American Medical Association. All Rights Reserved. Applicable FARS/DFARS Restrictions Apply to Government Use.2001

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

To the Editor: Dr Botkin addressed the issue of collecting family history data for research purposes.1 The central issue concerns the definitions of private information and human subjects under the Common Federal Rule.2 Individuals become human subjects when they interact directly with an investigator or when the investigator collects identifiable private information about them.3 Clearly, if personal information is known by others, it is not private. Precisely because of this, information shared with a physician, lawyer, or priest is protected from forced or negligent disclosure by legal, ethical, and professional standards of confidentiality. Botkin dismisses such arguments. However, while the Common Rule recognizes many vulnerable groups, including prisoners, pregnant women, children, minorities, and persons with mental retardation, nowhere is the penumbra of privacy extended to the family. If anamnestic family histories are not private, family members are not experimental subjects even when they are individually identifiable.

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