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Minors and informed consent in carrier testing: a survey of European clinical geneticists

Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Leuven, Belgium

Correspondence to:
P Borry, Kapucijnenvoer 35, Box 7001, 3000 Leuven, Belgium; Pascal.Borry{at}med.kuleuven.be

Purpose: A study was made of attitudes of clinical geneticists regarding the age at which minors should be allowed to undergo a carrier test and the reasons they provide to explain their answer.

Methods: European clinical institutions where genetic counselling is offered to patients were contacted. 177 (63%) of the 287 eligible respondents answered a questionnaire.

Results: Clinical geneticists were significantly more in favour of providing a carrier test to a younger person if the request was made together with the parents than if the adolescent requested the test personally. Although a large fraction of respondents (16%–30%) were "neither unwilling nor willing" to provide a carrier test to a 16-year-old adolescent who requested the test personally, for most disorders slightly more clinical geneticists were "very willing" or "willing".

Conclusion: Age is not the only decisive element when considering the participation of adolescents in decisions affecting their health. The clinical geneticists referred to cognitive, emotional and sexual maturity and the support of parents as crucial elements in their comments regarding when to tell children about their genetic risk or to allow adolescents to request a carrier test.