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Literature DB >> 26479563

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

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.

Entities: Disease Gene Species

Mesh：

Year: 2015 PMID： 26479563 PMCID： PMC4617197 DOI： 10.1111/jlme.12296

Source DB: PubMed Journal: J Law Med Ethics ISSN： 1073-1105 Impact factor: 1.718

36 in total

1. 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.

Authors: G Geller; E S Tambor; B A Bernhardt; L S Wissow; G Fraser
Journal: J Am Med Womens Assoc (1972) Date: 2000

2. Attitudes toward the genetic testing of children among adults in a Utah-based kindred tested for a BRCA1 mutation.

Authors: H A Hamann; R T Croyle; V L Venne; B J Baty; K R Smith; J R Botkin
Journal: Am J Med Genet Date: 2000-05-01

3. Decision-making by adolescents and parents of children with cancer regarding health research participation.

Authors: Kate Read; Conrad Vincent Fernandez; Jun Gao; Caron Strahlendorf; Albert Moghrabi; Rebecca Davis Pentz; Raymond Carlton Barfield; Justin Nathaniel Baker; Darcy Santor; Charles Weijer; Eric Kodish
Journal: Pediatrics Date: 2009-08-10 Impact factor: 7.124

4. Addressing the ethical challenges in genetic testing and sequencing of children.

Authors: Ellen Wright Clayton; Laurence B McCullough; Leslie G Biesecker; Steven Joffe; Lainie Friedman Ross; Susan M Wolf
Journal: Am J Bioeth Date: 2014 Impact factor: 11.229

5. Parents' preferences for return of results in pediatric genomic research.

Authors: S I Ziniel; S K Savage; N Huntington; J Amatruda; R C Green; E R Weitzman; P Taylor; I A Holm
Journal: Public Health Genomics Date: 2014-03-13 Impact factor: 2.000

6. Regulatory changes raise troubling questions for genomic testing.

Authors: Barbara J Evans; Michael O Dorschner; Wylie Burke; Gail P Jarvik
Journal: Genet Med Date: 2014-09-25 Impact factor: 8.822

7. Incidental findings in clinical genomics: a clarification.

Authors:
Journal: Genet Med Date: 2013-07-04 Impact factor: 8.822

8. ACMG policy statement: updated recommendations regarding analysis and reporting of secondary findings in clinical genome-scale sequencing.

Authors:
Journal: Genet Med Date: 2014-11-13 Impact factor: 8.822

9. Can I be sued for that? Liability risk and the disclosure of clinically significant genetic research findings.

Authors: Amy L McGuire; Bartha Maria Knoppers; Ma'n H Zawati; Ellen Wright Clayton
Journal: Genome Res Date: 2014-03-27 Impact factor: 9.043

10. Guidelines for return of research results from pediatric genomic studies: deliberations of the Boston Children's Hospital Gene Partnership Informed Cohort Oversight Board.

Authors: Ingrid A Holm; Sarah K Savage; Robert C Green; Eric Juengst; Amy McGuire; Susan Kornetsky; Stephanie J Brewster; Steven Joffe; Patrick Taylor
Journal: Genet Med Date: 2014-01-09 Impact factor: 8.822

5 in total

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

1. 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.

2. Attitudes toward the genetic testing of children among adults in a Utah-based kindred tested for a BRCA1 mutation.

3. Decision-making by adolescents and parents of children with cancer regarding health research participation.

4. Addressing the ethical challenges in genetic testing and sequencing of children.

5. Parents' preferences for return of results in pediatric genomic research.

6. Regulatory changes raise troubling questions for genomic testing.

7. Incidental findings in clinical genomics: a clarification.

8. ACMG policy statement: updated recommendations regarding analysis and reporting of secondary findings in clinical genome-scale sequencing.

9. Can I be sued for that? Liability risk and the disclosure of clinically significant genetic research findings.

10. Guidelines for return of research results from pediatric genomic studies: deliberations of the Boston Children's Hospital Gene Partnership Informed Cohort Oversight Board.

1. Honey, I Sequenced the Kids: Preventive Genomics and the Complexities of Adolescence.

2. An Observational Study of Children's Involvement in Informed Consent for Exome Sequencing Research.

3. Ethical Issues in Newborn Sequencing Research: The Case Study of BabySeq.

4. Pharmacogenomic Testing In Pediatrics: Navigating The Ethical, Social, And Legal Challenges.

Review 5. Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues.