ArticleAmerican journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics2010
In their own words: reports of stigma and genetic discrimination by people at risk for Huntington disease in 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 25 papers.
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
25 citing papers in PubMed.
- Observational
- Stigmatisation experiences in families with hereditary conditions: an exploratory study.Journal of community genetics · 2025Article
- Racial Disparities in Time to Huntington Disease Diagnosis in North America: An ENROLL-HD Analysis.Neurology. Clinical practice · 2024Article
- Research biobank participants attitudes towards genetic exceptionalism and health record confidentiality.Journal of community genetics · 2024Article
- Stigma associated with genetic testing for rare diseases-causes and recommendations.Frontiers in genetics · 2024Review
- Digital interventions for genomics and genetics education, empowerment, and service engagement: A systematic review.Journal of community genetics · 2023Review
- Hospice Care Experiences Among Decedents With Huntington's Disease.Journal of pain and symptom management · 2022Article
- Evaluation of Genetic Kidney Diseases in Living Donor Kidney Transplantation: Towards Precision Genomic Medicine in Donor Risk Assessment.Current transplantation reports · 2022Article
- Patient-facing genetic and genomic mobile apps in the UK: a systematic review of content, functionality, and quality.Journal of community genetics · 2022Review
- Genetic Testing for Rare Diseases: A Systematic Review of Ethical Aspects.Frontiers in genetics · 2021Review
- 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
- Therapeutic approaches to Huntington disease: from the bench to the clinic.Nature reviews. Drug discovery · 2018Review
- The Effect of Predictive Testing in Adult-Onset Neurodegenerative Diseases on Social and Personal Life.Journal of genetic counseling · 2018Article
- Prospective Evaluation of Predictive DNA Testing for Huntington's Disease in a Large German Center.Journal of genetic counseling · 2017Article
- New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system).Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2016Article
- 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
- A review of quality of life after predictive testing for and earlier identification of neurodegenerative diseases.Progress in neurobiology · 2013Review
- 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
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
11 authors.
Funding
Abstract
Genetic discrimination may be experienced in the day-to-day lives of people at risk for Huntington disease (HD), encompassing occurrences in the workplace, when seeking insurance, within social relationships, and during other daily encounters. At-risk individuals who have tested either positive or negative for the genetic expansion that causes HD, as well as at-risk persons with a 50% chance for developing the disorder but have not had DNA testing completed the International RESPOND-HD (I-RESPOND-HD) survey. One of the study's purposes was to examine perceptions of genetic stigmatization and discrimination. A total of 412 out of 433 participants provided narrative comments, and 191 provided related codable narrative data. The core theme, Information Control, refers to organizational policies and interpersonal actions. This theme was found in narrative comments describing genetic discrimination perceptions across employment, insurance, social, and other situations. These reports were elaborated with five themes: What They Encountered, What They Felt, What Others Did, What They Did, and What Happened. Although many perceptions were coded as hurtful, this was not true in all instances. Findings document that reports of genetic discrimination are highly individual, and both policy as well as interpersonal factors contribute to the outcome of potentially discriminating events.
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.