The ethics of disclosing genetic diagnosis for Alzheimers disease: Do we need a new paradigm?

Abstract

Introduction or backgroundGenetic testing for rare Mendelian disorders represents the dominant ethical paradigm in clinical and professional practice. Predictive testing for Huntingtons disease is the model against which other kinds of genetic testing are evaluated, including testing for Alzheimers disease. Sources of dataThis 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 agreementIn the past, ethical reasoning has embodied a distinct style whereby normative principles are developed from a dominant disease exemplar. Areas of controversyThis reductionist approach to formulating ethical frameworks breaks down in the case of disease susceptibility. Growing pointsRecent developments in the genetics of Alzheimers disease present a significant case for reconsidering the ethics of disclosing risk for common complex diseases. Disclosing the results of susceptibility testing for Alzheimers 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 researchThe 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. © 2011 The Author.