title: Perception, experience, and response to genetic discrimination in Huntington's disease: the Australian results of The International RESPOND-HD study.
abstract: OBJECTIVE
  This study examines elements of genetic discrimination among an at-risk, clinically undiagnosed Huntington's disease (HD) population.
  
  
  METHODS
  Sixty at-risk individuals, either positive or negative for the HD genetic mutation, completed a survey regarding their experiences of genetic discrimination, adverse and unfair treatment, and knowledge about existing laws and policies surrounding genetic discrimination.
  
  
  RESULTS
  Sixty eight percent of participants reported feeling "Great benefit" from knowing their genetic test results. Reported benefits of knowledge included planning for the future, making decisions, and many individuals found meaning in active participation in the HD community and in advocating for themselves or families at risk for HD. Many individuals found personal meaning and a sense of community from knowledge of this information and from the ability to participate in research. Despite these positive feelings toward gene testing, results demonstrated that 33% of participants perceived experiences of genetic discrimination, which occurred repeatedly and caused great self-reported distress. Significantly, more gene-positive respondents reported experiencing incidents of genetic discrimination, compared to gene-negative respondents. At least 58 separate incidents of discrimination were reported, the number of incidents ranged from 1 to 10, with 45% of individuals (9/20 respondents) indicating more than one event. Of the most significant events of discrimination, 58% were related to insurance, 21% to employment, 16% to transactions of daily life, and 5% to relationships.
  
  
  CONCLUSIONS
  Results contribute toward validation of empirical data regarding genetic discrimination.
authors.affiliation: Academic Unit for Psychiatry of Old Age, Department of Psychiatry, The University of Melbourne, Kew, Australia. goha@unimelb.edu.au
authors.forename: Anita M Y
authors.initials: AM
authors.lastname: Goh
authors.forename: Edmond
authors.initials: E
authors.lastname: Chiu
authors.forename: Olga
authors.initials: O
authors.lastname: Yastrubetskaya
authors.forename: Cheryl
authors.initials: C
authors.lastname: Erwin
authors.forename: Janet K
authors.initials: JK
authors.lastname: Williams
authors.forename: Andrew R
authors.initials: AR
authors.lastname: Juhl
authors.forename: Jane S
authors.initials: JS
authors.lastname: Paulsen
mesh_terms: D000328:Adult; D000368:Aged; D001315:Australia; D004651:Employment / Q000523:psychology*; D005260:Female; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D005820:Genetic Testing; D006306:Health Surveys; D006801:Humans; D006816:Huntington Disease / Q000175:diagnosis / Q000235:genetics* / Q000523:psychology*; D007348:Insurance, Health / Q000331:legislation & jurisprudence; D008297:Male; D008875:Middle Aged; D010465:Perception; D011287:Prejudice; D011795:Surveys and Questionnaires