Trial reportAmerican journal of medical genetics. Part A2008
Fear of health insurance loss among individuals at risk for Huntington disease.
Trial report in American journal of medical genetics. Part A, 2008. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 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
14 citing papers in PubMed, 2 syntheses or guidelines pooled it, 36 citations in OpenAlex.
- Global trends on fears and concerns of genetic discrimination: a systematic literature review.Journal of human genetics · 2016Pooled it
- Predictors of genetic testing decisions: a systematic review and critique of the literature.Journal of genetic counseling · 2014Pooled it
- Attitudes Toward Providing Open Access for Use of Biospecimens and Health Records: A Cross-Sectional Study from Jordan.Patient preference and adherence · 2023Article
- Interest in genetic testing in Ashkenazi Jewish Parkinson's disease patients and their unaffected relatives.Journal of genetic counseling · 2015Article
- What Factors Impact upon a Woman's Decision to Undertake Genetic Cancer Testing?Frontiers in oncology · 2014Article
- 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
- Would you want to know? Public attitudes on early diagnostic testing for Alzheimer's disease.Alzheimer's research & therapy · 2013Article
- Metabolic dysfunction in Alzheimer's disease and related neurodegenerative disorders.Current Alzheimer research · 2012Review
- 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
- Huntington disease: families' experiences of healthcare services.Journal of advanced nursing · 2010Article
- Nursing advocacy in a postgenomic age.The Nursing clinics of North America · 2009Review
- Huntington disease (chorea) in the middle East.Sultan Qaboos University medical journal · 2009Article
- Linking SNPs to CAG repeat length in Huntington's disease patients.Nature methods · 2008Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors at 3 institutions in 1 country.
Funding
Abstract
Genetic testing in Huntington disease, an inherited ultimately fatal neurodegenerative disorder, is infrequent despite wide availability. Factors influencing the decision to pursue testing are largely unknown. We conducted a prospective longitudinal observational study of 1,001 individuals in North America who were at risk for Huntington disease who had not pursued genetic testing prior to enrollment. We evaluated the rationale for remaining untested at baseline, determined the concerns of those who eventually pursued testing, and assessed the population's psychological attributes. We contrasted responses between those who did and did not pursue testing, and between United States and Canadian residents. The principal reasons for remaining untested were comfort with risk and uncertainty and the inability to "undo" knowledge gained. After enrollment, 83 individuals [8.3%] pursued genetic testing. Their greatest concern was losing health insurance, and 41.6% of them [vs. 6.7% of those who did not pursue testing; P < 0.001] reported paying out of pocket for testing or other medical services to conceal their genetic risk from their insurer/employer. Among individuals who were tested, more United States residents [46.1%] than Canadian residents [0.0%; P = 0.02] paid out of pocket for health services or genetic testing. Psychological attributes were similar among individuals who did and did not pursue testing. Individuals at risk for Huntington disease who pursued genetic testing feared losing medical insurance, and many paid out of pocket for medical services. Alleviating the fear of health insurance loss may help those who want to pursue genetic testing for many other conditions. [ClinicalTrials.gov number, NCT0052143].
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.