Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2015 Fall;43(3):538-44.
doi: 10.1111/jlme.12296.

How Much Control Do Children and Adolescents Have over Genomic Testing, Parental Access to Their Results, and Parental Communication of Those Results to Others?

Ellen Wright Clayton  1
Affiliations

How Much Control Do Children and Adolescents Have over Genomic Testing, Parental Access to Their Results, and Parental Communication of Those Results to Others?

Ellen Wright Clayton. J Law Med Ethics. 2015 Fall.

Abstract

Adolescents may often have opinions about whether they want genetic and genomic testing in both the clinic and research and about who should have access to the results. This legal analysis demonstrates that the law provides very little protection to minors' wishes.

PubMed Disclaimer

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Hamann HA, et al. Attitudes Toward The Genetic Testing of Children Among Adults in a Utah-Based Kindred Tested For a BRCA1 Mutation. American Journal of Medical Genetics. 2000;92(1):25–32. - PubMed
    2. Segal ME, et al. Adults' Values and Attitudes About Genetic Testing for Obesity Risk in Children. International Journal of Pediatric Obesity. 2007;2(1):11–21. - PubMed
    3. Peshkin BN, et al. Brief Assessment of Parents' Attitudes Toward Testing Minor Children For Hereditary Breast/Ovarian Cancer Genes: Development and Validation of the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS) Journal of Pediatric Psychology. 2009;34(6):627–638. - PMC - PubMed
    4. Levine FR, et al. Parental Attitudes, Beliefs, and Perceptions About Genetic Testing for FAP and Colorectal Cancer Surveillance in Minors. Journal of Genetic Counseling. 2010;19(3):269–279. - PMC - PubMed
    5. Tercyak KP, et al. Parents' Attitudes Toward Pediatric Genetic Testing for Common Disease Risk. Pediatrics. 2011;127(5):e1288–e1295. - PMC - PubMed
    6. Harris ED, et al. The Beliefs, Motivations, and Expectations of Parents Who Have Enrolled Their Children in a Genetic Biorepository. Genetics in Medicine. 2012;14(3):330–337. - PMC - PubMed
    7. Lakes KD, et al. Maternal Perspectives on the Return of Genetic Results: Context Matters. American Journal of Medical Genetics Part A. 2013;161A(1):38–47. - PMC - PubMed
    1. Geller G, et al. Mothers and Daughters From Breast Cancer Families: A Qualitative Study of Their Perceptions of Risks and Benefits Associated With Minor's Participation in Genetic Susceptibility Research. Journal of the American Medical Women's Association. 2000;55(5):280–284. - PubMed
    2. Fernandez CV, et al. Providing Research Results to Participants: Attitudes and Needs of Adolescents and Parents of Children With Cancer. Journal of Clinical Oncology. 2009;27(6):878–883. - PMC - PubMed
    1. Read K, et al. Decision-making by Adolescents and Parents of Children With Cancer Regarding Health Research Participation. Pediatrics. 2009;124(3):959–965. - PubMed
    1. Clayton EW. Removing the Shadow of the Law from the Debate about Genetic Testing of Children. American Journal of Medical Genetics. 1995;57(4):630–634. - PubMed
    2. Hoffman DE, Wulfsberg EA. Testing Children for Genetic Predispositions: Is It in Their Best Interest? Journal of Law, Medicine & Ethics. 1995;23(4):331–344. - PubMed
    3. Clayton EW. Genetic Testing in Children. Journal of Medicine and Philosophy. 1997;22(3):233–251. - PubMed
    4. Pelias MZ. Genetic Testing: Who Decides, Who Informs? Children’s Legal Rights Journal. 1998;18(2):43–46. - PubMed
    5. Pelias MK. Genetic Testing of Children for Adult-Onset Diseases: Is Testing in the Child's Best Interests? Mt. Sinai Journal of Medicine. 2006;73(3):605–608. - PubMed
    6. McGuire AL, et al. Can I Be Sued for That? Liability Risk and the Disclosure of Clinically Significant Genetic Research Findings. Genome Research. 2014;24(5):719–723. - PMC - PubMed
    1. Fallat ME, et al. Ethical and Policy Issues in Genetic Testing and Screening of Children. Pediatrics. 2013;131(3):620–622. - PubMed
    2. Ross LF, Saal HM, David KL, Anderson RR, American Academy of Pediatrics, American College of Medical Genetics and Genomics Technical Report: Ethical and Policy Issues in Genetic Testing and Screening of Children. Genetics in Medicine. 2013;15(3):234–245. - PubMed

Publication types

MeSH terms