Attitudes regarding predictive genetic testing in minors: a survey of European clinical geneticists

Abstract

The aim of this study is to gather information from European clinical geneticists about their practices and attitudes with regard to presymptomatic and predictive genetic testing in minors. European clinical institutes where genetic counseling is offered to patients were contacted. One hundred seventy-seven of the 287 eligible respondents (63%) answered a questionnaire. There was strongest support for testing young children when it provides a clear medical benefit, such as in the case of FAP and MEN2A. However, there is disagreement about when to provide predictive genetic testing for childhood-onset disorders for which therapeutic or preventive measures exist with some supporting the rule of earliest onset and others giving parents wider discretion. However, for childhood-onset disorders that do not have therapeutic measures, the majority of the respondents is unwilling to provide a presymptomatic or predictive genetic test. With respect to adolescents, many held a cautious position regarding presymptomatic and predictive genetic testing. Most clinical geneticists were unwilling to provide a presymptomatic or predictive genetic test for adult-onset diseases, except if it might provide a medical benefit. Although adolescents might be legally in the position to request a presymptomatic or predictive genetic test personally, the clinical geneticists are significantly more willing to provide a test if this request is made together with the minor's parents. This variability demonstrates the need for clinical geneticists to discuss their contradicting views and to develop harmonized practices throughout Europe.