ReviewJournal of medical genetics1996
Huntington's disease predictive testing: the case for an assessment approach to requests from adolescents.
Review 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 8 papers.
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
8 citing papers in PubMed.
- Ethical Dilemmas Linked to Fragile X Testing of Minors-a Preliminary Survey Among Professionals.Journal of molecular neuroscience : MN · 2020Article
- "This could be me": exploring the impact of genetic risk for Huntington's disease young caregivers.Journal of community genetics · 2019Article
- Ethics in genetic counselling.Journal of community genetics · 2019Review
- Experiences of teens living in the shadow of Huntington Disease.Journal of genetic counseling · 2008Article
- "Family matters": a conceptual framework for genetic testing in children.Journal of genetic counseling · 2004Article
- Inappropriate genetic testing of children.Archives of disease in childhood · 2000Review
- Response to requests for genetic testing is not based on age alone.BMJ (Clinical research ed.) · 1999Article
- The genetic testing of children.Journal of the Royal Society of Medicine · 1997Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Adolescents who are actively requesting Huntington's predictive testing of their own accord pose a dilemma to those providing testing. In the absence of empirical evidence as regards the impact of genetic testing on minors, current policy and guidelines, based on the ethical principles of non-maleficence and respect for individual autonomy and confidentiality, generally exclude the testing of minors. It is argued that adherence to an age based exclusion criterion in Huntington's disease predictive testing protocols is out of step with trends in UK case law concerning minors' consent to medical treatment. Furthermore, contributions from developmental psychology and research into adolescents' decision making competence suggest that adolescents can make informed choices about their health and personal lives. Criteria for developing an assessment approach to such requests are put forward and the implications of a case by case evaluation of competence to consent in terms of clinicians' tolerance for uncertainty are discussed.
Indexed as
Identifiers
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.