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The 130th Annual Meeting of APHA |
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The 130th Annual Meeting of APHA |
Dorothy C. Wertz, PhD, Social Science, Ethics, and Law, University of Massachusetts Medical School, Shriver Division, 200 Trapelo Road, Waltham, MA 02452, 781-642-0292, Dorothy.Wertz@umassmed.edu
In order to facilitate global discussion of the complex ethical and social issue of disclosure of genetic information to family members, against an individual’s wishes, we surveyed 4629 genetics professionals in 36 nations, 852 US primary care physicians, 1461 genetics patients (or parents) in the US, Canada, Germany and France, and 1000 members of the US public. The anonymous questionnaires asked about views on disclosure of an individual’s genetic information to relatives at genetic risk, to spouses or partners, and to adoptees and birthparents. In all, 2906 genetics professionals (63%), 499 primary care physicians (59%), 476 patients in the US (67%), 591 in Germany (66%), 394 in France (51%), and 988 members of the US public (99%) responded. There was no consensus among geneticists about disclosure to relatives against a patient’s wishes, but except in North America and Northern/Western Europe, the family, rather than the individual, appeared to be the “unit of privacy.” Most respondents thought that adoptees should have access to medical information about their birthparents, including causes of death. A minority of US geneticists (26%) and a majority of US patients (74%) would disclose nonpaternity to a husband/partner who asks directly whether he is the father of a child.
Learning Objectives:
Keywords: Genetics, Privacy
Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.