ABSTRACT
Recent advances in molecular genetics mean that doctors are now in a position to test for certain genetic disorders that may develop later in life; similarly, carrier testing has become more frequent. This has prompted debate about the ethical justification of presymptomatic testing of adults. The presymptomatic testing of children is an ethical issue that is even more complex. However, those providing genetic counselling on such topics must consider not only the wishes of the parents but also the rights of the child. This paper reports on a qualitative study of thirty families attending an out-patient Regional Genetics Clinic, and discusses the problems that the genetic counsellor faces in negotiating the everyday exigencies of such work. In particular, we focus on the question of how guidelines or protocols might help counsellors deal with these routine, practical dilemmas. The paper examines the way in which these dilemmas are managed by geneticists and families. We explore the potential conflict between guidelines for genetic counselling practice and the interests and anxieties experienced by families.
