ArticleJournal of medical genetics1996
Parents' responses to predictive genetic testing in their children: report of a single case study.
Article in Journal of medical genetics, 1996. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 1 of them a synthesis that pooled it.
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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.
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Who cites it
16 citing papers in PubMed, 1 synthesis or guideline pooled it, 47 citations in OpenAlex.
- Methodology in longitudinal studies on psychological effects of predictive DNA testing: a review.Journal of medical genetics · 2004Pooled it
- How harmful is genetic testing for familial adenomatous polyposis (FAP) in young children; the parents' experience.Familial cancer · 2014Article
- High school Tay-Sachs disease carrier screening: 5 to 11-year follow-up.Journal of community genetics · 2014Article
- Predictive genetic testing in children: constitutional mismatch repair deficiency cancer predisposing syndrome.Journal of genetic counseling · 2014Article
- Experience, knowledge, and opinions about childhood genetic testing in Batten disease.Molecular genetics and metabolism · 2014Article
- Ethical issues in presymptomatic genetic testing for minors: a dilemma in Li-Fraumeni syndrome.Journal of genetic counseling · 2013Article
- Parental attitudes, beliefs, and perceptions about genetic testing for FAP and colorectal cancer surveillance in minors.Journal of genetic counseling · 2010Article
- The challenge of developmentally appropriate care: predictive genetic testing in young people for familial adenomatous polyposis.Familial cancer · 2010Article
- Predictive genetic testing in children: where are we now? An overview and a UK perspective.Familial cancer · 2010Article
- Genetic testing of children for familial cancers: a comparative legal perspective on consent, communication of information and confidentiality.Familial cancer · 2010Article
- Parental knowledge and attitudes toward hypertrophic cardiomyopathy genetic testing.Pediatric cardiology · 2010Article
- Predictive testing of eighteen year olds: counseling challenges.Journal of genetic counseling · 2006Article
- Predictive genetic testing in children and adults: a study of emotional impact.Journal of medical genetics · 2001Article
- Who Is at Risk for Psychological Distress in Genetic Testing Programs for Hereditary Cancer Disorders?Journal of genetic counseling · 2000Article
- Parents' responses to predictive genetic testing in their children.Journal of medical genetics · 1997Article
- Predictive genetic testing in children.Journal of medical genetics · 1996Article
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Authors and funding
5 authors at 1 institution in 1 country.
Funding
Abstract
There is a widely held view among health professionals that predictive genetic testing of children for late onset diseases is not desirable clinical practice. Yet, little is known about the views of parents, or their responses, to predictive genetic testing in their children. Since such testing is being carried out in some genetic centres, the opportunity was taken to conduct a single case study of the parents of 2 and 4 year old sisters who were tested for the gene for familial adenomatous polyposis. Interviews before testing, after, and 15 months later showed a stable attitude, that parental responsibility included making decisions about such testing, and that the role of health professionals should be one of information giving rather than decision making. These parents had no regrets about having their children tested and reported no changes in their behaviour towards either the child who tested positively or the child who tested negatively. Using standardised scales, mood was found to be within the normal range both before and after testing in the mother and father. This case study is a first step towards systematic empirical studies determining the consequences of acquiescing to parents' requests for genetic testing in their children.
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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.