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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: Although Dr Botkin's analysis of family members in survey and pedigree research addresses many important issues,1 scientific validity as a component of ethical research deserves further attention.

For reasons of transparency, we have elsewhere argued for classifying pedigrees in research as proband-derived, partially validated, and fully validated.2 Not all pedigrees will need to be validated, but some will. Validity of so-called hearsay data varies with proband characteristics and target information.3 In attempting to validate pedigrees, investigators confront many of the privacy issues described by Botkin. Decisions about whether and how to contact family members raises additional ethical and methodological issues.2 Individuals who are not contacted or decline participation present unique challenges; many of the considerations regarding identifiability and privacy of information are most applicable to these groups. Botkin distinguishes the line between public and private information using ease of discernability in social interactions—information "we usually cannot conceal" and information considered private though shared with family (eg, health data). However, deduced information, while public, may not be reliable (eg, race) and certain health data are readily discernable (eg, stroke, active-phase schizophrenia). This manner of distinguishing public from private has practical limitations. Research participants can choose to keep details of family histories confidential. We believe that individuals "own" their understanding of their family history and should be allowed to determine how to treat it.