Unambiguous test results or individual independence? The role of clients and families in predictive BRCA-testing in the Netherlands compared to the USA

Social Science & Medicine
Marianne Boenink

Abstract

It has been frequently acknowledged that results of predictive genetic tests may have implications for relatives as well as for the individual client. Ethicists have noted that an individual's right to know her genetic risk may conflict with a relative's right not to know this risk. It is hardly recognised, however, that family members may have a role in the production of test results as well. This article reconstructs the actual process of predictive BRCA-testing in the Netherlands, with a special focus on the roles assigned to clients and families and the expectations about family relationships inscribed in this practice. Fieldwork was carried out in an outpatient clinic for clinical genetics in an academic hospital. Data collection included 11 interviews with members of families, observations of counselling interviews between research participants and their clinical geneticist, and interviews with the 2 clinical geneticists involved in the consultations. It compares this process to the American practice of BRCA-testing. Whereas Dutch practice presupposes active involvement of diseased relatives in the testing process, American practice constitutes the client primarily as an independent individual who may or may not decide to...Continue Reading

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Citations

Jan 24, 2013·European Journal of Human Genetics : EJHG·Kelly A McClellanDenise Avard
Aug 13, 2011·Social Science & Medicine·Mara Buchbinder, Stefan Timmermans
Jul 16, 2010·Social Science & Medicine·Els GeelenKlasien Horstman
Jun 15, 2011·Social Science & Medicine·Klasien Horstman, Kaja Finkler

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