The ethics of disclosing genetic diagnosis for Alzheimer's disease: do we need a new paradigm?

INTRODUCTION OR BACKGROUND Genetic testing for rare Mendelian disorders represents the dominant ethical paradigm in clinical and professional practice. Predictive testing for Huntington's disease is the model against which other kinds of genetic testing are evaluated, including testing for Alzheimer's disease. SOURCES OF DATA This paper retraces the historical development of ethical reasoning in relation to predictive genetic testing and reviews a range of ethical, sociological and psychological literature from the 1970s to the present. AREAS OF AGREEMENT In the past, ethical reasoning has embodied a distinct style whereby normative principles are developed from a dominant disease exemplar. AREAS OF CONTROVERSY This reductionist approach to formulating ethical frameworks breaks down in the case of disease susceptibility. GROWING POINTS Recent developments in the genetics of Alzheimer's disease present a significant case for reconsidering the ethics of disclosing risk for common complex diseases. Disclosing the results of susceptibility testing for Alzheimer's disease has different social, psychological and behavioural consequences. Furthermore, what genetic susceptibility means to individuals and their families is diffuse and often mitigated by other factors and concerns. AREAS TIMELY FOR DEVELOPING RESEARCH The ethics of disclosing a genetic diagnosis of susceptibility is contingent on whether professionals accept that probabilistic risk information is in fact 'diagnostic' and it will rely substantially on empirical evidence of how people actually perceive, recall and communicate complex risk information.