ArticleAmerican journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics2010
Perception, experience, and response to genetic discrimination in Huntington disease: the international RESPOND-HD study.
Article in American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 4 of them syntheses that pooled it.
What it found
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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.
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Who cites it
34 citing papers in PubMed, 4 syntheses or guidelines pooled it, 58 citations in OpenAlex.
- A systematic review of knowledge, attitude and practice of pharmacogenomics in pediatric oncology patients.Pharmacology research & perspectives · 2023Pooled it
- Demographic Characteristics Associated With Perceptions of Personal Utility in Genetic and Genomic Testing: A Systematic Review.JAMA network open · 2023Pooled it
- Global trends on fears and concerns of genetic discrimination: a systematic literature review.Journal of human genetics · 2016Pooled it
- Pooled it
- Learning about a heightened genetic risk for dementia: Expected stigma is greater than experienced stigma.Psychology and aging · 2026Article
- Attitudes Toward Sex-Specific Versus Universal Newborn Screening for X-Linked Adrenoleukodystrophy in Hong Kong.International journal of neonatal screening · 2026Article
- Personalized health predictions challenge existing insurance frameworks: Time to revisit life and disability insurance regulation?Journal of genetic counseling · 2026Article
- Addressing genetic discrimination for stronger legal protections and enhanced public awareness.NPJ genomic medicine · 2025Article
- Experiences of stigmatization and its impacts among individuals living with hereditary diseases and family members in Portugal: an exploratory study.Journal of community genetics · 2025Article
- Challenges in studying disparities in neuropsychiatric hyperkinetic movement disorders.Current opinion in neurology · 2025Review
- Pharmacogenomics in pediatric oncology: Australian adolescent or young adult and caregiver perspectives.Genetics in medicine open · 2025Article
- Predicting age of onset and progression of disease in late-onset genetic neurodegenerative diseases: An ethics review and research agenda.European journal of human genetics : EJHG · 2024Review
- Identification of psychoeducation needs and an intervention response for pre-symptomatic Huntington's disease.Journal of community genetics · 2023Article
- Attitude Disparity and Worrying Scenarios in Genetic Discrimination-Based on Questionnaires from China.Healthcare (Basel, Switzerland) · 2023Article
- Benefits and Risks of Sharing Genomic Data for Research: Comparing the Views of Rare Disease Patients, Informal Carers and Healthcare Professionals.International journal of environmental research and public health · 2022Article
- "Data is the new oil": citizen science and informed consent in an era of researchers handling of an economically valuable resource.Life sciences, society and policy · 2021Article
- 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
- Perceptions of the impact of chorea on health-related quality of life in Huntington disease (HD): A qualitative analysis of individuals across the HD spectrum, family members, and clinicians.Neuropsychological rehabilitation · 2020Article
- Understanding domains that influence perceived stigma in individuals with Huntington disease.Rehabilitation psychology · 2020Article
- Ethics in genetic counselling.Journal of community genetics · 2019Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors at 6 institutions in 3 countries.
Funding
Abstract
Genetic discrimination-defined as the denial of rights, privileges, or opportunities or other adverse treatment based solely on genetic information (including family history)-is an important concern to patients, healthcare professionals, lawmakers, and family members at risk for carrying a deleterious gene. Data from the United States, Canada, and Australia were collected from 433 individuals at risk for Huntington disease (HD) who have tested either positive or negative for the gene that causes HD and family members of affected individuals who have a 50% risk for developing the disorder but remain untested. Across all three countries, a total of 46.2% of respondents report genetic discrimination or stigma based on either their family history of HD or genetic testing for the HD gene mutation. We report on the overall incidence of discrimination and stigma in the domains of insurance (25.9%), employment (6.5%), relationships (32.9%), and other transactions (4.6%) in the United States, Canada, and Australia combined. The incidence of self-reported discrimination is less than the overall worry about the risk of discrimination, which is more prevalent in each domain. Despite a relatively low rate of perceived genetic discrimination in the areas of health insurance and employment, compared to the perception of discrimination and stigma in personal relationships, the cumulative burden of genetic discrimination across all domains of experience represents a challenge to those at risk for HD. The effect of this cumulative burden on daily life decisions remains unknown.
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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.