Predictive Genetic Testing in Children and Respect for Autonomy PHILLIPA MALPAS Department of Philosophy, University of Auckland Introduction Predictive genetic testing of asymptomatic children for diseases that will not develop until adulthood and for which no cure or medical bene fi t is available is not recommended by international genetic society guidelines (Council on Ethical and Judicial A ff airs, 1995), (Human Genetics Services Association, 2003), (Clarke et al., 1994), (World Health Organisation, 1997), (Huntington’s Disease Society of America, 1994), (National Advisory on Health and Disability, 2003), (American Academy of Pediatrics, 2001), (National Society of Genetic Counselors, 2003). This is for a number of important reasons, one of which is that children have a right to autonomy, and “testing in childhood removes the possibility of that individual making an autonomous decision as an adult” (Human Genetics Services Association, 2003) . Such concerns are also re fl ected in the report of a working party of the Clinical Genetics Society (UK) which claims that such testing of children should not generally be under- taken: “We would generally advise against such testing, unless there are clear cut and unusual arguments in favour. Formal genetic testing should generally wait until the
The International Journal of Children's Rights – Brill
Published: Jan 1, 2005
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