Understanding Life's Lottery: An Evaluation of Studies of Genetic Risk Awareness

This article reviews studies of risk awareness of carriers of genetic disorders and individuals who attend genetic counselling. It focuses upon investigations of recall of risk estimates following counselling. Six factors are discussed which may influence individuals' recall of genetic risk estimates. These include: mode of genetic transmission, counsellees' reproductive behaviour or intentions, time delay between counselling and data collection, prior familiarity with the disorder, subjective perceptions of risk, and the way that risk information is presented during counselling. It is argued that using counsellees' recall of genetic risk estimates as a measure of the effectiveness of counselling is problematic, both at a methodological and conceptual level. It is suggested that assessments of the effectiveness of genetic counselling must involve an approach which conceptualizes counselling as a dynamic process in which both counsellee and counsellor have active roles to play.