title: The ethics of disclosing genetic diagnosis for Alzheimer's disease: do we need a new paradigm?
abstract: 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.
  
  
  METHODS
  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.
  
  
  RESULTS
  In the past, ethical reasoning has embodied a distinct style whereby normative principles are developed from a dominant disease exemplar.
  
  
  RESULTS
  This reductionist approach to formulating ethical frameworks breaks down in the case of disease susceptibility.
  
  
  CONCLUSIONS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Cardiff School of Social Sciences, Cardiff University, Cardiff, UK. arribas-ayllonm@cf.ac.uk
authors.forename: Michael
authors.initials: M
authors.lastname: Arribas-Ayllon
mesh_terms: D000544:Alzheimer Disease / Q000175:diagnosis* / Q000235:genetics; D053327:Apolipoprotein E4 / Q000235:genetics; D004992:Ethics, Medical; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000941:ethics*; D006801:Humans; D014342:Truth Disclosure / Q000941:ethics*
chemical_list: D053327:Apolipoprotein E4