ArticleAmerican journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics2008
Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease.
Article in American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics, 2008. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 papers, 1 of them a synthesis that pooled it.
What it found
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Who cites it
27 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Global trends on fears and concerns of genetic discrimination: a systematic literature review.Journal of human genetics · 2016Pooled it
- Significant underascertainment in Huntington's disease.Brain communications · 2025Article
- Understanding domains that influence perceived stigma in individuals with Huntington disease.Rehabilitation psychology · 2020Article
- The Effect of Predictive Testing in Adult-Onset Neurodegenerative Diseases on Social and Personal Life.Journal of genetic counseling · 2018Article
- Analysis of the Reasons for Non-Uptake of Predictive Testing for Huntington's Disease in Spain: A Qualitative Study.Journal of genetic counseling · 2015Article
- Onset of Huntington's disease: can it be purely cognitive?Movement disorders : official journal of the Movement Disorder Society · 2014Article
- The influence of medical testing on patients' health: an overview from the gynecologists' perspective.BMC medical informatics and decision making · 2013Article
- Perception, experience, and response to genetic discrimination in Huntington's disease: the Australian results of The International RESPOND-HD study.Genetic testing and molecular biomarkers · 2013Article
- Consumer awareness and attitudes about insurance discrimination post enactment of the Genetic Information Nondiscrimination Act.Familial cancer · 2012Article
- Spontaneous disclosure of BRCA1/2 genetic test results to employers: a French prospective study.European journal of human genetics : EJHG · 2012Article
- Media coverage of direct-to-consumer genetic testing.Journal of genetic counseling · 2011Article
- Factors associated with experiences of genetic discrimination among individuals at risk for Huntington disease.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics · 2011Article
- The role of disease perceptions and results sharing in psychological adaptation after genetic susceptibility testing: the REVEAL Study.European journal of human genetics : EJHG · 2010Article
- Personal factors associated with reported benefits of Huntington disease family history or genetic testing.Genetic testing and molecular biomarkers · 2010Article
- In their own words: reports of stigma and genetic discrimination by people at risk for Huntington disease in the International RESPOND-HD study.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics · 2010Article
- Couples' attributions for work function changes in prodromal Huntington disease.Journal of genetic counseling · 2010Article
- Potential stigma associated with inclusion of the psychosis risk syndrome in the DSM-V: an empirical question.Schizophrenia research · 2010Article
- Perception, experience, and response to genetic discrimination in Huntington disease: the international RESPOND-HD study.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics · 2010Article
- Parental attitudes, beliefs, and perceptions about genetic testing for FAP and colorectal cancer surveillance in minors.Journal of genetic counseling · 2010Article
- Huntington disease: families' experiences of healthcare services.Journal of advanced nursing · 2010Article
Corrections and comments
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Authors and funding
8 authors.
Funding
Abstract
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.
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