Abstract

It is commonly assumed that costs of individual genotyping will steadily decrease over the next few years, leading certain researchers and policy makers to argue that genetic testing for certain complex diseases should be routinized to improve clinical care. In this presentation I will first indicate some of the difficulties involved in conveying the complex, unfolding knowledge about AD genetics to patients, their families, and the public at large. Findings will then be presented from interviews with individuals, themselves unaffected by AD, but whose families have one or more member diagnosed with AD, and who participated in the Risk Evaluation and Education for Alzheimer’s Disease study, an RCT carried out at four sites in the US in which subjects were genotyped and informed about their APOE status. One year later, less than one quarter of the interviewees recall their genotype or risk estimates correctly and family history is regarded by virtually all as a better indicator of future disease than is genetic testing. The questionable worth of individualized risk estimates will also be discussed.