ArticleEuropean journal of human genetics : EJHG2008
Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease.
Article in European journal of human genetics : EJHG, 2008. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
24 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Global trends on fears and concerns of genetic discrimination: a systematic literature review.Journal of human genetics · 2016Pooled it
- Pooled it
- Addressing genetic discrimination and its stigmatizing effects through human rights.Journal of community genetics · 2026Article
- Genetic discrimination in insurance and employment based on personalized risk stratification for breast cancer screening.Frontiers in genetics · 2025Article
- Genetic discrimination: introducing the Asian perspective to the debate.NPJ genomic medicine · 2021Review
- Normalising life at risk of Huntington's disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination.European journal of human genetics : EJHG · 2021Article
- Management of information within Portuguese families with Huntington disease: a transgenerational process for putting the puzzle together.European journal of human genetics : EJHG · 2020Article
- Locus of control in patients with Huntington disease: a cross-sectional study.The Journal of the Canadian Chiropractic Association · 2020Article
- Why Patients Decline Genomic Sequencing Studies: Experiences from the CSER Consortium.Journal of genetic counseling · 2018Article
- The Effect of Predictive Testing in Adult-Onset Neurodegenerative Diseases on Social and Personal Life.Journal of genetic counseling · 2018Article
- The Genetic Non-Discrimination Act: critical for promoting health and science in Canada.CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne · 2018Article
- Genetics and Personal Insurance: the Perspectives of Canadian Cancer Genetic Counselors.Journal of genetic counseling · 2015Article
- Ethics of genetic and biomarker test disclosures in neurodegenerative disease prevention trials.Neurology · 2015Review
- Making the decision to participate in predictive genetic testing for arrhythmogenic right ventricular cardiomyopathy.Journal of genetic counseling · 2014Article
- Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts.European journal of human genetics : EJHG · 2012Article
- What's at stake? Genetic information from the perspective of people with epilepsy and their family members.Social science & medicine (1982) · 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
- 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
- Stigmatization and male identity: Norwegian males' experience after identification as BRCA1/2 mutation carriers.Journal of genetic counseling · 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
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
It has been over 20 years since the inception of predictive testing for Huntington disease (HD), yet the social implications of knowing one's genetic risk for HD have not been fully explored. Genetic discrimination (GD) is a potential risk associated with predictive testing. Although anecdotal reports of GD have been documented, there is a paucity of research on the nature and experiences of GD in the context of HD. The purpose of this study was to describe the concerns and experiences of GD in the HD community. Semistructured interviews were conducted with 45 genetically tested and 10 untested individuals and analyzed using grounded theory methods. Our findings demonstrate that a majority of individuals were concerned about (37/55) and experienced GD (32/55) across a variety of contexts that extend beyond the traditionally examined contexts of insurance and employment to include family, social, government, and health-care domains. We describe a process of engagement with GD in which individuals formed meaningful interpretations of GD and personalized its risk and consequences in their lives. Our findings provide an insight into some of the specific processes and factors influencing engagement with GD. These results help identify areas where more education and support is needed and provide direction to genetic professionals supporting their clients as they confront issues of GD and genetic testing.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.