ArticleEuropean journal of human genetics : EJHG2013
When access is an issue: exploring barriers to predictive testing for Huntington disease in British Columbia, Canada.
Article in European journal of human genetics : EJHG, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 2 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
13 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- A systematic review of geographical inequities for accessing clinical genomic and genetic services for non-cancer related rare disease.European journal of human genetics : EJHG · 2022Pooled it
- Genetic counseling and testing practices for late-onset neurodegenerative disease: a systematic review.Journal of neurology · 2022Pooled it
- Time poverty of families of children with 22q11DS: a healthcare professional perspective.BMC pediatrics · 2026Article
- Maintaining psychological well-being when living at risk of Huntington's disease: An interpretative phenomenological analysis.Journal of genetic counseling · 2025Article
- Far and wide: Exploring provider utilization of remote service provision for genome-wide sequencing in Canada.Molecular genetics & genomic medicine · 2021Article
- Ethics in genetic counselling.Journal of community genetics · 2019Review
- Perspectives on Genetic Testing and Return of Results from the First Cohort of Presymptomatically Tested Individuals At Risk of Huntington Disease.Journal of genetic counseling · 2018Article
- Experiences of Genetic Counselors Practicing in Rural Areas.Journal of genetic counseling · 2018Article
- Prenatal testing in Huntington disease: after the test, choices recommence.European journal of human genetics : EJHG · 2016Article
- 22 Years of predictive testing for Huntington's disease: the experience of the UK Huntington's Prediction Consortium.European journal of human genetics : EJHG · 2016Article
- Access to Specialist Care in Rural Saskatchewan: The Saskatchewan Rural Health Study.Healthcare (Basel, Switzerland) · 2015Article
- Knowledge of genetic testing for hereditary kidney cancer in Canada is lacking: The results of the Canadian national hereditary kidney cancer needs assessment survey.Canadian Urological Association journal = Journal de l'Association des urologues du Canada · 2014Article
- Access to personalized medicine: factors influencing the use and value of gene expression profiling in breast cancer treatment.Current oncology (Toronto, Ont.) · 2014Article
Corrections and comments
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Authors and funding
3 authors.
Funding
Abstract
Predictive testing (PT) for Huntington disease (HD) requires several in-person appointments. This requirement may be a barrier to testing so that at risk individuals do not realize the potential benefits of PT. To understand the obstacles to PT in terms of the accessibility of services, as well as exploring mechanisms by which this issue may be addressed, we conducted an interview study of individuals at risk for HD throughout British Columbia, Canada. Results reveal that the accessibility of PT can be a barrier for two major reasons: distance and the inflexibility of the testing process. Distance is a structural barrier, and relates to the time and travel required to access PT, the financial and other opportunity costs associated with taking time away from work and family to attend appointments and the stress of navigating urban centers. The inflexibility of the testing process barrier relates to the emotional and psychological accessibility of PT. The results of the interview study reveal that there are access barriers to PT that deter individuals from receiving the support, information and counseling they require. What makes accessibility of PT services important is not just that it may result in differences in quality of life and care, but because these differences may be addressed with creative and adaptable solutions in the delivery of genetic services. The study findings underscore the need for us to rethink and personalize the way we deliver such services to improve access issues to prevent inequities in the health care system.
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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.