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December 2, 1998

Permission and Confidentiality in Publishing Pedigrees

Author Affiliations

Margaret A.WinkerMD, Senior EditorIndividualAuthorPhil B.FontanarosaMD, Senior EditorIndividualAuthor

JAMA. 1998;280(21):1826-1827. doi:10-1001/pubs.JAMA-ISSN-0098-7484-280-21-jbk1202

To the Editor.—Dr Botkin and colleagues1 highlight potential issues of confidentiality in the publication of pedigrees. Unfortunately, in their survey of journal and investigator practices concerning identifying pedigrees, they do not define what constitutes an identifying pedigree. Any pedigree that does not use masking or alteration is potentially identifiable, but the likelihood of such occurrence may vary greatly depending on the presented information. Although they reviewed the pedigrees published by 226 authors, they did not assess whether any of these pedigrees were indeed identifiable using reasonable search effort. It would have been interesting to know what fraction of these pedigrees could be traced to an individual.

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