ArticleGenetic testing and molecular biomarkers2013
Perception, experience, and response to genetic discrimination in Huntington's disease: the Australian results of The International RESPOND-HD study.
Article in Genetic testing and molecular biomarkers, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 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
9 citing papers in PubMed, 2 syntheses or guidelines pooled it, 25 citations in OpenAlex.
- Personal utility in genomic testing: a systematic literature review.European journal of human genetics : EJHG · 2017Pooled it
- Global trends on fears and concerns of genetic discrimination: a systematic literature review.Journal of human genetics · 2016Pooled it
- Workplace Wellness Programs for Employees at Risk for Cardiovascular Disease: A Systematic Review.American journal of health promotion : AJHP · 2026Review
- Genetic testing for neurodegenerative diseases: Ethical and health communication challenges.Neurobiology of disease · 2020Review
- Establishing the International Genetic Discrimination Observatory.Nature genetics · 2020Article
- How are genetic test results being used by Australian life insurers?European journal of human genetics : EJHG · 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
- Genetic information, non-discrimination, and privacy protections in genetic counseling practice.Journal of genetic counseling · 2014Article
- A review of quality of life after predictive testing for and earlier identification of neurodegenerative diseases.Progress in neurobiology · 2013Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 2 institutions in 2 countries.
Funding
Abstract
aimsThis study examines elements of genetic discrimination among an at-risk, clinically undiagnosed Huntington's disease (HD) population.
methodsSixty at-risk individuals, either positive or negative for the HD genetic mutation, completed a survey regarding their experiences of genetic discrimination, adverse and unfair treatment, and knowledge about existing laws and policies surrounding genetic discrimination.
resultsSixty eight percent of participants reported feeling "Great benefit" from knowing their genetic test results. Reported benefits of knowledge included planning for the future, making decisions, and many individuals found meaning in active participation in the HD community and in advocating for themselves or families at risk for HD. Many individuals found personal meaning and a sense of community from knowledge of this information and from the ability to participate in research. Despite these positive feelings toward gene testing, results demonstrated that 33% of participants perceived experiences of genetic discrimination, which occurred repeatedly and caused great self-reported distress. Significantly, more gene-positive respondents reported experiencing incidents of genetic discrimination, compared to gene-negative respondents. At least 58 separate incidents of discrimination were reported, the number of incidents ranged from 1 to 10, with 45% of individuals (9/20 respondents) indicating more than one event. Of the most significant events of discrimination, 58% were related to insurance, 21% to employment, 16% to transactions of daily life, and 5% to relationships.
conclusionResults contribute toward validation of empirical data regarding genetic discrimination.
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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.