Ethical and Social Issues in Screening for Genetic Disease

Abstract

The potential advent of widespread genetic screening raises new and often unanticipated ethical, psychologic and sociomedical problems for which physicians and the public may be unprepared. To focus attention on the problems of stigmatization, confidentiality, and breaches of individual rights to privacy and freedom of choice in childbearing, we have proposed a set of principles for guiding the operation of genetic screening programs. The main principles emphasized include the need for well planned program objectives, involvement of the communities immediately affected by screening, provision of equal access, adequate testing procedures, absence of compulsion, a well defined procedure for obtaining informed consent, safeguards for protecting subjects, open access of communities and individuals to program policies, provision of counseling services, an understanding of the relation of screening to realizable or potential therapies, and well formulated procedures for protecting the rights of individual and family privacy.