ABSTRACT

This paper reports the results of conjoint surveys of stakeholders’ views, including a 37-nation survey of 2903 geneticists, and surveys of 499 United States primary care physicians, 409 parents visiting genetics clinics in the US and Canada, and 988 members of the US public. In the US, parents, public, and primary care physicians favoured parents’ rights to have their children tested for adult-onset conditions such as Alzheimer disease and Huntington disease. The majority of US geneticists would refuse testing, as would geneticists in northern/western Europe and English-speaking countries. In Asia, Latin America, and southern/eastern Europe, the majority of geneticists would accede to parental requests. This paper discusses the future of testing in the US in view of cultural beliefs in autonomy and the movement of genetics into general medicine.