ReviewJournal of neurology, neurosurgery, and psychiatry2000
Psychological impact of genetic testing for Huntington's disease: an update of the literature.
Review in Journal of neurology, neurosurgery, and psychiatry, 2000. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 63 papers, 5 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
63 citing papers in PubMed, 5 syntheses or guidelines pooled it, 245 citations in OpenAlex.
- The psychological impact of predictive genetic testing for Huntington's disease: a systematic review of the literature.Journal of genetic counseling · 2015Pooled it
- Predictors of genetic testing decisions: a systematic review and critique of the literature.Journal of genetic counseling · 2014Pooled it
- Emotional distress following genetic testing for hereditary breast and ovarian cancer: a meta-analytic review.Health psychology : official journal of the Division of Health Psychology, American Psychological Association · 2009Pooled it
- How risk is perceived, constructed and interpreted by clients in clinical genetics, and the effects on decision making: systematic review.Journal of genetic counseling · 2008Pooled it
- Methodology in longitudinal studies on psychological effects of predictive DNA testing: a review.Journal of medical genetics · 2004Pooled it
- Schoolhouse risk: Can we mitigate the polygenic Pygmalion effect?Acta psychologica · 2024Trial
- Genetic testing for the susceptibility to alcohol dependence: interest and concerns in an African American population.Genetic testing and molecular biomarkers · 2014Trial
- Impact of awareness of genetic status on cognitive, behavioral, and neuropsychiatric outcomes in genetic frontotemporal dementia.Journal of neurology · 2026Article
- Psychosocial Impacts of Huntington's Disease on Individuals, Relatives and Family Systems: A Thematic Synthesis.Clinical genetics · 2026Review
- Randomized Trial of Telegenetic Counseling for Gene Testing in Huntington Disease.Neurology. Clinical practice · 2025Article
- Interest in genetic susceptibility testing and disclosure of AD dementia risk in cognitively normal adults: a survey study.Alzheimer's research & therapy · 2024Article
- The Early Diagnosis of Alzheimer's Disease: A Patient-Centred Conversation with the Care Team.Neurology and therapy · 2023Article
- Genetic testing and screening in children.Paediatrics & child health · 2022Review
- Les tests et le dépistage génétiques chez les enfants.Paediatrics & child health · 2022Review
- An ethical analysis of divergent clinical approaches to the application of genetic testing for autism and schizophrenia.Human genetics · 2022Article
- Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers.European journal of human genetics : EJHG · 2021Article
- Genetic counselling and testing for inherited dementia: single-centre evaluation of the consensus Italian DIAfN protocol.Alzheimer's research & therapy · 2020Article
- Discouraging Elective Genetic Testing of Minors: A Norm under Siege in a New Era of Genomic Medicine.Cold Spring Harbor perspectives in medicine · 2020Review
- Locus of control in patients with Huntington disease: a cross-sectional study.The Journal of the Canadian Chiropractic Association · 2020Article
- A framework for youth-friendly genetic counseling.Journal of community genetics · 2020Article
3 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Genetic testing has been available for Huntington's disease for longer than any other adult onset genetic disorder. The discovery of the genetic mutation causing Huntington's disease made possible the use of predictive testing to identify currently unaffected carriers. Concerns have been raised that predictive testing may lead to an increase in deaths by suicide among identified carriers, and these concerns set in motion research to assess the psychological impact of predictive testing for Huntington's disease. This review article provides an overview of the literature and draws implications for clinical practice. About 10%-20% of people at risk request testing when approached by registries or testing centres. Most of the evidence suggests that non-carriers and carriers differ significantly in terms of short term, but not long term, general psychological distress. Adjustment to results was found to depend more on psychological adjustment before testing than the testing result itself. Although risk factors for psychological sequelae have been identified, few adverse events have been described and no obvious contraindications for testing people at risk have been identified. The psychological impact of testing may depend on whether testing was based on linkage analysis or mutation detection. Cohorts enrolled in mutation detection programmes have higher levels of depression before and after testing, compared with people who sought genetic testing when linkage analysis was available. There is evidence that people who choose to be tested are psychologically selected for a favourable response to testing. The impact of testing on people in settings where less intensive counselling protocols and eligibility criteria are used is unknown, and genetic testing is therefore best offered as part of comprehensive specialist counselling.
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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.