ArticleEuropean journal of human genetics : EJHG2011
Are the kids really all right? Direct-to-consumer genetic testing in children: are company policies clashing with professional norms?
Article in European journal of human genetics : EJHG, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis 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
19 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Internet-Based Direct-to-Consumer Genetic Testing: A Systematic Review.Journal of medical Internet research · 2015Pooled it
- Direct-to-Consumer Genetic Testing.NEJM evidence · 2025Review
- Article
- Measuring high-risk parents' opinions about direct-to-consumer genetic testing for adult-onset inherited cancer syndromes in their adolescent and young adult children.Journal of genetic counseling · 2023Article
- Actionability of commercial laboratory sequencing panels for newborn screening and the importance of transparency for parental decision-making.Genome medicine · 2021Article
- Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies.The Hastings Center report · 2018Article
- Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape.Journal of community genetics · 2018Article
- Paternity testing under the cloak of recreational genetics.European journal of human genetics : EJHG · 2017Article
- Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.American journal of human genetics · 2015Review
- Direct-to-consumer genomics on the scales of autonomy.Journal of medical ethics · 2015Article
- Direct-to-consumer genetic testing in Slovenia: availability, ethical dilemmas and legislation.Biochemia medica · 2015Article
- "Would you test your children without their consent?" and other sticky dilemmas in the field of cancer genetic testing.Familial cancer · 2014Article
- Experience, knowledge, and opinions about childhood genetic testing in Batten disease.Molecular genetics and metabolism · 2014Article
- Current issues in medically assisted reproduction and genetics in Europe: research, clinical practice, ethics, legal issues and policy. European Society of Human Genetics and European Society of Human Reproduction and Embryology.European journal of human genetics : EJHG · 2013Article
- A review of quality of life after predictive testing for and earlier identification of neurodegenerative diseases.Progress in neurobiology · 2013Review
- The perspective from EASAC and FEAM on direct-to-consumer genetic testing for health-related purposes.European journal of human genetics : EJHG · 2013Review
- An exploration of genetic health professionals' experience with direct-to-consumer genetic testing in their clinical practice.European journal of human genetics : EJHG · 2012Article
- Health care providers and direct-to-consumer access and advertising of genetic testing in the United States.Genome medicine · 2011Article
- Direct-to-consumer personalized genomic testing.Human molecular genetics · 2011Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
Abstract
The genetic testing of minors within the direct-to-consumer (DTC) genetic testing (GT) context has been given relatively little attention. The issue of testing healthy children for diseases that would only develop in adulthood raises many important ethical, legal and social issues. As genetic testing is now available outside of the traditional health care system, often without even the intermediate of a health care professional, we surveyed 37 DTC GT companies regarding their policies for testing in children. Although the response rate is relatively low (35%, 13/37), our findings reveal that a clear majority of companies do perform genetic testing in minors. As such, companies testing for adult onset diseases are acting in contradiction of established professional guidelines, which state, among others, that, for predictive genetic testing, the availability of therapeutic or preventive measures is necessary for testing to be performed in asymptomatic minors. The community of stakeholders in children's health care and genetic testing should, therefore, decide which standards need to be upheld by DTC GT companies and ensure that these are met.
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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.