Title

Perception, Experience, and Response to Genetic Discrimination in Huntington's Disease: the Australian results of The International RESPOND-HD study.

Document Type

Article

Peer Reviewed

1

Publication Date

2-1-2013

NLM Title Abbreviation

Genet Test Mol Biomarkers

Journal/Book/Conference Title

Genetic Testing and Molecular Biomarkers

PubMed ID

23289616

DOI of Published Version

10.1089/gtmb.2012.0288

Abstract

AIMS: 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.

CONCLUSION: Results contribute toward validation of empirical data regarding genetic discrimination.

Keywords

Adult, Aged, Australia, Employment, Female, Genetic Predisposition to Disease, Genetic Testing, Health Surveys, Humans, Huntington Disease, Insurance, Health, Male, Middle Aged, Perception, Prejudice, Questionnaires

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URL

https://ir.uiowa.edu/nursing_pubs/1988