Literature DB >> 28140662

Pediatric Issues in Return of Results and Incidental Findings: Weighing Autonomy and Best Interests.

Ingrid A Holm1,2,3.   

Abstract

Nowhere are the ethical issues in genomic research more complex than in pediatrics. Balancing the sometime conflicting autonomy of the parent and the child, and the best interest of the family and the child, brings up many challenging issues. Addressing this balance, especially in the context of the child's developing maturity and comprehension, requires deep analysis and discussion. Issues discussed include the impact of genetic information on the family, parental versus the child's autonomy, the best interests of the child versus the family, potential limitations on the parents' right to know or not know information about their child, and changing role of the developing child in return of research results. Finally, a dynamic model will be proposed that takes into consideration the child's evolving role in consenting and return of results that can be adapted in different national contexts.

Entities:  

Keywords:  consent; ethics; pediatrics; return of genomic results

Mesh:

Year:  2017        PMID: 28140662      PMCID: PMC5367908          DOI: 10.1089/gtmb.2016.0414

Source DB:  PubMed          Journal:  Genet Test Mol Biomarkers        ISSN: 1945-0257


  34 in total

1.  Genetic dilemmas and the child's right to an open future.

Authors:  D S Davis
Journal:  Rutgers Law J       Date:  1997

2.  Introduction: return of research results: how should research results be handled?

Authors:  Bartha Maria Knoppers; Emmanuelle Lévesque
Journal:  J Law Med Ethics       Date:  2011       Impact factor: 1.718

3.  Predictive genetic testing of children and the role of the best interest standard.

Authors:  Lainie Friedman Ross
Journal:  J Law Med Ethics       Date:  2013       Impact factor: 1.718

4.  Participant Satisfaction With a Preference-Setting Tool for the Return of Individual Research Results in Pediatric Genomic Research.

Authors:  Ingrid A Holm; Brittany R Iles; Sonja I Ziniel; Phoebe L Bacon; Sarah K Savage; Kurt D Christensen; Elissa R Weitzman; Robert C Green; Noelle L Huntington
Journal:  J Empir Res Hum Res Ethics       Date:  2015-10       Impact factor: 1.742

5.  Returning pleiotropic results from genetic testing to patients and research participants.

Authors:  Jonathan M Kocarnik; Stephanie M Fullerton
Journal:  JAMA       Date:  2014-02-26       Impact factor: 56.272

6.  Offering to return results to research participants: attitudes and needs of principal investigators in the Children's Oncology Group.

Authors:  Conrad V Fernandez; Eric Kodish; Susan Shurin; Charles Weijer
Journal:  J Pediatr Hematol Oncol       Date:  2003-09       Impact factor: 1.289

7.  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

8.  An empirical examination of the management of return of individual research results and incidental findings in genomic biobanks.

Authors:  Gina Johnson; Frances Lawrenz; Mao Thao
Journal:  Genet Med       Date:  2012-02-23       Impact factor: 8.822

9.  The past, present, and future of the debate over return of research results and incidental findings.

Authors:  Susan M Wolf
Journal:  Genet Med       Date:  2012-04       Impact factor: 8.822

10.  The beliefs, motivations, and expectations of parents who have enrolled their children in a genetic biorepository.

Authors:  Erin D Harris; Sonja I Ziniel; Jonathan G Amatruda; Catherine M Clinton; Sarah K Savage; Patrick L Taylor; Noelle L Huntington; Robert C Green; Ingrid A Holm
Journal:  Genet Med       Date:  2012-01-26       Impact factor: 8.822

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  2 in total

1.  Attitudes of stakeholders in psychiatry towards the inclusion of children in genomic research.

Authors:  Anna Sundby; Merete Watt Boolsen; Kristoffer Sølvsten Burgdorf; Henrik Ullum; Thomas Folkmann Hansen; Ole Mors
Journal:  Hum Genomics       Date:  2018-03-05       Impact factor: 4.639

Review 2.  Paediatric biobanking for health: The ethical, legal, and societal landscape.

Authors:  Sara Casati; Bridget Ellul; Michaela Th Mayrhofer; Marialuisa Lavitrano; Elodie Caboux; Zisis Kozlakidis
Journal:  Front Public Health       Date:  2022-09-27
  2 in total

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