ArticleGenetic testing and molecular biomarkers2010
Personal factors associated with reported benefits of Huntington disease family history or genetic testing.
Article in Genetic testing and molecular biomarkers, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 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
18 citing papers in PubMed, 2 syntheses or guidelines pooled it, 26 citations in OpenAlex.
- Demographic Characteristics Associated With Perceptions of Personal Utility in Genetic and Genomic Testing: A Systematic Review.JAMA network open · 2023Pooled it
- Personal utility in genomic testing: a systematic literature review.European journal of human genetics : EJHG · 2017Pooled it
- Reasons for and against presymptomatic genetic testing in frontotemporal dementia: a qualitative study.Human genetics · 2026Article
- Using a Clinical Formulation to Understand Psychological Distress in People Affected by Huntington's Disease: A Descriptive, Evidence-Based Model.Journal of personalized medicine · 2022Article
- Prospective Evaluation of Predictive DNA Testing for Huntington's Disease in a Large German Center.Journal of genetic counseling · 2017Article
- Interest in and reactions to genetic risk information: The role of implicit theories and self-affirmation.Social science & medicine (1982) · 2017Article
- Presentation and care of a family with Huntington disease in a resource-limited community.Journal of clinical movement disorders · 2017Article
- Analysis of the Reasons for Non-Uptake of Predictive Testing for Huntington's Disease in Spain: A Qualitative Study.Journal of genetic counseling · 2015Article
- Do Attachment Style and Emotion Regulation Strategies Indicate Distress in Predictive Testing?Journal of genetic counseling · 2015Article
- Information Avoidance Tendencies, Threat Management Resources, and Interest in Genetic Sequencing Feedback.Annals of behavioral medicine : a publication of the Society of Behavioral Medicine · 2015Article
- Dispositional optimism and perceived risk interact to predict intentions to learn genome sequencing results.Health psychology : official journal of the Division of Health Psychology, American Psychological Association · 2015Article
- Prediction of manifest Huntington's disease with clinical and imaging measures: a prospective observational study.The Lancet. Neurology · 2014Observational
- Targeted Local Support Vector Machine for Age-Dependent Classification.Journal of the American Statistical Association · 2014Article
- A review of quality of life after predictive testing for and earlier identification of neurodegenerative diseases.Progress in neurobiology · 2013Review
- Two decades of Huntington disease testing: patient's demographics and reproductive choices.Journal of genetic counseling · 2013Article
- Deaf genetic testing and psychological well-being in deaf adults.Journal of genetic counseling · 2013Article
- 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
- The ever-evolving concept of clinical significance and the potential for sins of omission in genetic research.The American journal of bioethics : AJOB · 2012Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 1 institution in 1 country.
Funding
Abstract
aimsA family history of Huntington disease (HD) or receiving results of HD predictive genetic testing can influence individual well-being, family relationships, and social interactions in positive and negative ways. The aim of this study was to examine benefits reported by people with an HD family history or those who have undergone predictive HD testing, as well as the personal variables associated with perceived benefits.
methodsSeventy-four of 433 people completing the International Response of a Sample Population to HD risk (I-RESPOND-HD) survey reported benefits. Knowledge and understanding was perceived as the most common benefit from participants in both groups. The next most frequent perceived benefits from a family history were connecting with others and achieving life meaning and insights. The next most common perceived benefits from genetic testing were life planning and social support. The least common perceived benefit for both groups was renewed hope and optimism. Older age and spirituality were significantly associated with benefits in both groups.
conclusionsPerceptions of benefit may not be as likely until later years in people with prodromal HD. A developed sense of spirituality is identified as a personal resource associated with the perception of benefit from genetic testing for HD. Associations among spirituality, perceived benefits, and other indicators of personal and family well-being may be useful in genetic counseling and health care of people with prodromal HD.
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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.