Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease

Document Type


Peer Reviewed


Publication Date


NLM Title Abbreviation

Am J Med Genet B Neuropsychiatr Genet

Journal/Book/Conference Title

American journal of medical genetics.Part B, Neuropsychiatric genetics

PubMed ID


DOI of Published Version


Start Page


End Page



Potential discrimination from genetic testing may undermine technological advances for health care. Researching long-term consequences of testing for genetic conditions that may lead to discrimination is a public health priority. The consequences of genetic discrimination generate social, health, and economic burdens for society by diminishing opportunities for at-risk individuals in a range of contexts. The current study objective was to investigate perceptions of genetic stigmatization and discrimination among persons who completed predictive testing for Huntington's disease (HD). Using semi-structured interviews and computerized qualitative analysis, the perceptions of 15 presymptomatic persons with a positive gene test predicting HD were examined with regard to differential treatment following testing. The sample comprised 11 women and 4 men, mostly married (73%), aged between 22 and 62 years, with an average education of 14.6 years (SD +/- 2.57) and residing in urban, rural and suburban settings of eight U.S. States. Participants reported perceptions of consequences following disclosure of genetic test results in three areas: employment, insurance, and social relationships. Although most employed participants (90%) revealed their test results to their employers, nearly all reported they would not disclose this information to future employers. Most (87%) participants disclosed test results to their physician, but a similar majority (83%) did not tell their genetic status to insurers. Most participants (87%) disclosed test results to family and peers; patterns of disclosure varied widely. Discrimination concerns remain high in this sample and point to the need for more information to determine the extent and scope of the problem.


Adult, Disclosure, Female, Genetic Testing/psychology, Humans, Huntington Disease/diagnosis/genetics, Insurance Carriers, Interpersonal Relations, Likelihood Functions, Male, Middle Aged, Prejudice, Social Perception

Published Article/Book Citation

American journal of medical genetics.Part B, Neuropsychiatric genetics, 147:3 (2008) pp.320-325. DOI:10.1002/ajmg.b.30600.

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