ABSTRACT

Assumptions about the ‘new genetics’ and its potential to transform health and ‘empower’ ‘consumers’ are nowhere more clearly articulated than in the rapidly developing area of genetic counselling. In recent years a growing number of writers have expounded the importance of counselling for facilitating autonomy in decisionmaking before and/or after genetic testing, especially in reproductive decisions but also in treatment and life-style decisions in the case of so-called ‘adult-onset’ disorders. Genetic counselling is a relatively new profession, which is predicted to play an increasingly important role at the interface between scientists and ‘consumers’, in both the communication of the risk information arising from genetic research and in offering support to those who are confronted with the attendant choices and dilemmas. This alone makes it an important area for analysis in its own right. However, studies of genetic counselling and its social impacts will be of relevance not just to genetic counsellors or counsellees, since the issues are gaining a broader significance as more and more information about the genetic basis of disease is generated and provides the foundation for decisions in health care. As Clarke argues, the problems that now arise in genetic counselling and its impact on families with common genetic diseases will soon become commonplace in primary health care and medical practice (1997a:192-3). It is therefore crucial to expose and critically appraise the assumptions that underpin genetic counselling and guide its practices.