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Letters |

Permission and Confidentiality in Publishing Pedigrees—Reply

Jeffrey R. Botkin, MD, MPH; William M. McMahon, MD; Ken R. Smith, PhD; Jean E. Nash
JAMA. 1998;280(21):1826-1827. doi:10-1001/pubs.JAMA-ISSN-0098-7484-280-21-jbk1202.
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In Reply.—Dr Schrock notes accurately that we did not attempt to determine the identifiability of the pedigrees reviewed in our study. We acknowledged this limitation in our article; however, we emphasize that we are primarily concerned about identifiability by the family depicted in the pedigree, not by third parties such as ourselves. The ability of a family member to identify his or her own pedigree would vary with the unique qualities of the disease, pedigree structure, and sophistication of the family member. We are unaware of any current method that would quantify the identifiability of a pedigree. Our determinations about the family's ability to identify a pedigree would be highly subjective. Investigators and their local institutional review boards are in a much better position than third parties to determine whether pedigree diagrams are likely to be identifiable by the families involved. Nevertheless, our research indicated that a substantial percentage of investigators know that families are reading articles that include their pedigree, so lack of identifiability clearly is not a barrier for many families in obtaining this information.


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