Working up policy: the use of specific disease exemplars in formulating general principles governing childhood genetic testing
Health Care Analysis: An International Journal of Health Philosophy and Policy 2006 March; 14(1): 1-13
Non-therapeutic genetic testing in childhood presents a "myriad of ethical questions"; questions which are discussed and resolved in professional policy and position statements. In this paper we consider an underdiscussed but strongly influential feature of policy-making, the role of selective case and exemplar in the production of general recommendations. Our analysis, in the tradition of rhetoric and argumentation, examines the predominate use of three particular disease exemplar (Huntington's disease, Tay-Sachs disease and sickle cell disease) to argue for or against particular genetic tests (predictive testing and testing for carrier status). We discuss the influence these choices have on the type and strength of subsequent recommendations. We argue that there are lessons to be drawn about how genetic diseases are conceptualised and we caution against the geneticisation of medical policy making.
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Genetic Testing is Different [reviews of GENETIC TESTING FOR ALZHEIMER DISEASE: ETHICAL AND CLINICAL ISSUES, by Stephen G. Post and Peter J. Whitehouse and PROMOTING SAFE AND EFFECTIVE GENETIC TESTING IN THE UNITED STATES: PRINCIPLES AND RECOMMENDATIONS, by Task Force on Genetic Testing, NIH-DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research] Clayton, Ellen Wright (2001-04)