Literature DB >> 22084845

Pediatric research and the return of individual research results.

Denise Avard1, Karine Sénécal, Parvaz Madadi, Daniel Sinnett.   

Abstract

The return of individual research results to participants raises many socio-ethical issues and is even more challenging when the participant is a child. The objective of this article is to present an overview of the few ethical guidelines and relevant literature addressing the return of individual results in pediatric research. By reviewing policies and the literature, we present some overarching considerations and delineate contextual issues in order to propose a framework.
© 2011 American Society of Law, Medicine & Ethics, Inc.

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Year:  2011        PMID: 22084845     DOI: 10.1111/j.1748-720X.2011.00626.x

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


  18 in total

1.  Regulating biobanking with children's tissue: a legal analysis and the experts' view.

Authors:  Elcke J Kranendonk; M Corrette Ploem; Raoul C M Hennekam
Journal:  Eur J Hum Genet       Date:  2015-04-15       Impact factor: 4.246

Review 2.  Incidental findings from clinical genome-wide sequencing: a review.

Authors:  Z Lohn; S Adam; P H Birch; J M Friedman
Journal:  J Genet Couns       Date:  2013-05-26       Impact factor: 2.537

3.  Return of whole-genome sequencing results in paediatric research: a statement of the P3G international paediatrics platform.

Authors:  Bartha Maria Knoppers; Denise Avard; Karine Sénécal; Ma'n H Zawati
Journal:  Eur J Hum Genet       Date:  2013-08-07       Impact factor: 4.246

4.  Utilizing Focus Groups with Potential Participants and Their Parents: An Approach to Inform Study Design in a Large Clinical Trial.

Authors:  Sandeep Kadimpati; Jennifer B McCormick; Yichen Chiu; Ashley B Parker; Aliya Z Iftikhar; Randall P Flick; David O Warner
Journal:  AJOB Empir Bioeth       Date:  2014-01-01

5.  Practical guidance on informed consent for pediatric participants in a biorepository.

Authors:  Kyle B Brothers; John A Lynch; Sharon A Aufox; John J Connolly; Bruce D Gelb; Ingrid A Holm; Saskia C Sanderson; Jennifer B McCormick; Janet L Williams; Wendy A Wolf; Armand H M Antommaria; Ellen W Clayton
Journal:  Mayo Clin Proc       Date:  2014-09-26       Impact factor: 7.616

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

Authors:  Ingrid A Holm
Journal:  Genet Test Mol Biomarkers       Date:  2017-01-31

7.  Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject.

Authors:  Sarah Scollon; Katie Bergstrom; Laurence B McCullough; Amy L McGuire; Stephanie Gutierrez; Robin Kerstein; D Williams Parsons; Sharon E Plon
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

8.  Adolescent perspectives on the return of individual results in genomic addiction research.

Authors:  Marilyn E Coors; Kristen M Raymond; Shannon K McWilliams; Christian J Hopfer; Susan K Mikulich-Gilbertson
Journal:  Psychiatr Genet       Date:  2015-06       Impact factor: 2.458

9.  Parental Perception of Self-Empowerment in Pediatric Pharmacogenetic Testing: The Reactions of Parents to the Communication of Actual and Hypothetical CYP2D6 Test Results.

Authors:  Sarah Adelsperger; Cynthia A Prows; Melanie F Myers; Cassandra L Perry; Ariel Chandler; Ingrid A Holm; John A Lynch
Journal:  Health Commun       Date:  2016-08-30

10.  Clarifying assent in pediatric research.

Authors:  Noor A A Giesbertz; Annelien L Bredenoord; Johannes J M van Delden
Journal:  Eur J Hum Genet       Date:  2013-06-12       Impact factor: 4.246

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