Can children and young people consent to be tested for adult onset genetic disorders? Commentary: Weighing burdens and benefits rather than competence

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Abstract
Case study Consider the following case. As a general practitioner, you are confronted with Alison, an intelligent 15 year old girl whose father has recently tested positive for Huntington's disease. His own mother died of the condition before Alison was born. Alison wants to know whether she too will develop Huntington's disease. Her parents, who have accompanied her to the surgery, support her wish. Alison's mother is herself contemplating genetic testing for the BRCA1 gene implicated in some breast cancers, because her mother and elder sister died from the disease. You know that the clinical genetics unit serving your patients will not test anyone under 18, although Alison can have counselling. You point out that according to the unit's careful protocol even those over 18 must undergo counselling before having the test. Alison thinks this over and replies, “I can see the point of having some talks with the counsellor first. But if I do decide I want it, do I still have to wait another 3 years before I can actually have the test?” Footnotes Competing interests None declared. References ↵ American Society for Human Genetics/Advisory Council on Medical Genetics .Points to consider: ethical, legal and psychosocial implications of genetic testing in children and adolescents.Am J Hum Genet1995; 57:1233–1241. Fryer A .Genetic testing of children.Arch Dis Child1995; 73:97–99. Harper PS, Clarke A .Should we test children for “adult” genetic diseases?Lancet1990; 335:1205–1206. Marteau T .The genetic testing of children.J Med Genet1994; 31:743. Wertz DC, Fanos JH, Reilly PR .Genetic testing for children and adolescents: who decides?JAMA1994; 272:875–881. Clayton EW .Removing the shadow of the law from the debate about genetic testing of children.Am J Med Genet1995; 57:630–634. ↵ Chapple A, May C, Campion P .Predictive and carrier testing of children: professional dilemmas for clinical geneticists.Eur J Genet Soc1996; 2:28–37. ↵ Clarke A Cohen CB .Moving away from the Huntington's disease paradigm in the predictive genetic testing of children.In: Clarke A, ed. The genetic testing of children.Oxford:BIOS Scientific Publishers,1998:133–143. ↵ Clarke A Binedell J .Adolescent requests for predictive genetic testing.In: Clarke A, ed. The genetic testing of children.Oxford:BIOS Scientific Publishers,1998:123–132.