ArticleJournal of genetic counseling2004
"Family matters": a conceptual framework for genetic testing in children.
Article in Journal of genetic counseling, 2004. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 2 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
23 citing papers in PubMed, 2 syntheses or guidelines pooled it, 66 citations in OpenAlex.
- Genetic counseling for fragile x syndrome: updated recommendations of the national society of genetic counselors.Journal of genetic counseling · 2005Guideline
- Policy recommendations for carrier testing and predictive testing in childhood: a distinction that makes a real difference.Journal of genetic counseling · 2005Guideline
- Young people's experience of predictive genetic testing for inherited cardiac conditions: a qualitative study.European journal of human genetics : EJHG · 2026Article
- Genomic tools for health: Secondary findings as findings to be shared.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- A framework for youth-friendly genetic counseling.Journal of community genetics · 2020Article
- Ethics in genetic counselling.Journal of community genetics · 2019Review
- Family Communication About Genetic Risk of Hereditary Cardiomyopathies and Arrhythmias: an Integrative Review.Journal of genetic counseling · 2018Review
- "They Just Want to Know" - Genetic Health Professionals' Beliefs About Why Parents Want to Know their Child's Carrier Status.Journal of genetic counseling · 2017Article
- Duchenne Muscular Dystrophy: a Survey of Perspectives on Carrier Testing and Communication Within the Family.Journal of genetic counseling · 2016Article
- Helping Couples Fulfill the "Highest of Life's Goals": Mate Selection, Marriage Counselling, and Genetic Counseling in United States.Journal of genetic counseling · 2016Article
- Respecting autonomous decision making among Filipinos: a re-emphasis in genetic counseling.Journal of genetic counseling · 2015Article
- LQTS parents' reflections about genetic risk knowledge and their need to know or not to know their children's carrier status.Journal of genetic counseling · 2014Article
- Assessment of parental disclosure of a 22q11.2 deletion syndrome diagnosis and implications for clinicians.Journal of genetic counseling · 2012Article
- Counseling adolescents and the challenges for genetic counselors.Journal of genetic counseling · 2012Article
- Predictive genetic testing in children: where are we now? An overview and a UK perspective.Familial cancer · 2010Article
- Predictive genetic testing in a young child: a case report.Familial cancer · 2010Article
- Genetic testing of children for familial cancers: a comparative legal perspective on consent, communication of information and confidentiality.Familial cancer · 2010Article
- Are guidelines for genetic testing of children necessary?Familial cancer · 2010Article
- Disclosure of genetic information within families.The American journal of nursing · 2009Review
- Adolescent carrier testing in practice: the impact of legal rulings and problems with "gillick competence".Journal of genetic counseling · 2008Article
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 in minor children presents a complex ethical and social problem. Current guidelines state that genetic testing of children is recommended only under circumstances where a clear medical or psychosocial benefit to the child can be demonstrated. Because of the difficulty in determining a psychosocial benefit, the discussion about genetic testing of minors ultimately tends to focus on who has the right to make the decision and whose right to autonomy is jeopardized, the parent's or the child's, when there is no identified medical benefit. Historically, a western bioethics paradigm, Principlism, has been used to guide genetic counseling sessions and genetic-testing guidelines for minors. This bioethics paradigm is guided by the principles: respect for autonomy, beneficence, nonmaleficence, and justice. Genetic testing in children, when viewed through a traditional bioethics filter is limited by its focus on the individual because children are not only individuals, they are also integral parts of a larger social context, that of their family. Because this bioethics paradigm places a strong emphasis on individual autonomy, the family's beliefs and values and the parents' concern for their children may be overshadowed by the medical community's attempt to preserve the child's "right" to an autonomous decision about genetic testing. The purpose of this paper is to first discuss the circumstances in which genetic testing of minors occurs and then present a theoretical and ethics-based conceptual framework that may be useful in the development of genetic counseling interventions.
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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.