ArticleEuropean journal of human genetics : EJHG2009
Decreasing uptake of predictive testing for Huntington's disease in a German centre: 12 years' experience (1993-2004).
Article in European journal of human genetics : EJHG, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 2 of them syntheses that pooled it.
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Who cites it
16 citing papers in PubMed, 2 syntheses or guidelines pooled it, 36 citations in OpenAlex.
- Prevalence and predictors of medical information avoidance: a systematic review and meta-analysis.Annals of behavioral medicine : a publication of the Society of Behavioral Medicine · 2025Pooled it
- Prenatal Testing for Adult-Onset Conditions: the Position of the National Society of Genetic Counselors.Journal of genetic counseling · 2016Guideline
- Current Overview of Spinocerebellar Ataxia Type 7 in Mexican Population: Challenges in Specialized Care for a Rare Disease.International journal of molecular sciences · 2024Review
- Perceptions about Research Participation among Individuals at Risk and Individuals with Premanifest Huntington's Disease: A Survey Conducted by the European Huntington Association.Journal of personalized medicine · 2021Article
- Predictive testing for Huntington disease over 24 years: Evolution of the profile of the participants and analysis of symptoms.Molecular genetics & genomic medicine · 2019Article
- Ethical issues in neurogenetics.Handbook of clinical neurology · 2018Review
- 1993-2014: two decades of predictive testing for Huntington's disease at the Medical Genetics Unit of the University of Genoa.Molecular genetics & genomic medicine · 2017Article
- 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
- Ethical Considerations for the Return of Incidental Findings in Ophthalmic Genomic Research.Translational vision science & technology · 2016Article
- Analysis of the Reasons for Non-Uptake of Predictive Testing for Huntington's Disease in Spain: A Qualitative Study.Journal of genetic counseling · 2015Article
- Quality issues concerning genetic counselling for presymptomatic testing: a European Delphi study.European journal of human genetics : EJHG · 2015Article
- Genetics Health Professionals' Views on Quality of Genetic Counseling Service Provision for Presymptomatic Testing in Late-Onset Neurological Diseases in Portugal: Core Components, Specific Challenges and the Need for Assessment Tools.Journal of genetic counseling · 2015Article
- Predictive testing for inherited prion disease: report of 22 years experience.European journal of human genetics : EJHG · 2014Article
- Genetic counseling and presymptomatic testing programs for Machado-Joseph Disease: lessons from Brazil and Portugal.Genetics and molecular biology · 2014Article
- [Newborn screening as a predictive genetic test: principles and challenges].Wiener medizinische Wochenschrift (1946) · 2012Article
- Extended family impact of genetic testing: the experiences of X-linked carrier grandmothers.Journal of genetic counseling · 2011Article
Corrections and comments
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Authors and funding
5 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
In this retrospective study, we examined changes in decision-making for and against the predictive genetic test for Huntington's disease including 478 persons at risk who had undergone genetic counselling in one centre in Germany between 1993 and 2004. At the outset of the counselling procedure the majority of subjects (71%) wanted to make use of the test, yet the actual demand of the predictive test result declined from 67 to 38% over the years. In addition, the time interval between counselling session and blood withdrawal was reduced, as determined by the counselees: in 2000-2004 the majority of persons at risk made the appointment for blood withdrawal after the shortest possible time span. Demographic factors of the cohort remained comparatively stable in the investigated time period. An association was evident between the ratio of test usage and the counselling person. These and other possible factors influencing the time flow of predictive DNA testing are discussed. Further studies are necessary to investigate whether changes of test demand rates are a general phenomenon.
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