Literature DB >> 23543065

Paediatric research and the communication of not-so incidental findings.

Bartha Maria Knoppers1.   

Abstract

Paediatric research may well be the first field in which the ethical implications of next-generation sequencing (NGS) will be appreciated. Allowing as it does for the revelation of much more than just the disease gene being researched, the advent of NGS will require careful consideration of the return of research results and incidental findings to parents. In contrast to the choices offered to adults with regard to the return of both research results and incidental findings, the same does not hold true for children. Parents must act in their 'medical' best interests. Current policy guidance on this issue in Canada is unclear.

Entities:  

Keywords:  Ethics; Incidental findings; Next-generation sequencing; Paediatrics; Research results

Year:  2012        PMID: 23543065      PMCID: PMC3381660          DOI: 10.1093/pch/17.4.190

Source DB:  PubMed          Journal:  Paediatr Child Health        ISSN: 1205-7088            Impact factor:   2.253


  6 in total

1.  Resolution No. 43/112. Question of a convention on the rights of the child, 8 December 1988.

Authors: 
Journal:  Annu Rev Popul Law       Date:  1988

2.  Building a foundation for biobanking: the 2009 OECD guidelines on human biobanks and genetic research databases (HBGRDs).

Authors:  Jane Kaye
Journal:  Eur J Health Law       Date:  2010-03

3.  Feedback of individual genetic results to research participants: in favor of a qualified disclosure policy.

Authors:  Annelien L Bredenoord; N Charlotte Onland-Moret; Johannes J M Van Delden
Journal:  Hum Mutat       Date:  2011-06-30       Impact factor: 4.878

4.  Not so simple: a quasi-experimental study of how researchers adjudicate genetic research results.

Authors:  Robin Zoe Hayeems; Fiona Alice Miller; Li Li; Jessica Peace Bytautas
Journal:  Eur J Hum Genet       Date:  2011-03-16       Impact factor: 4.246

5.  The emergence of an ethical duty to disclose genetic research results: international perspectives.

Authors:  Bartha Maria Knoppers; Yann Joly; Jacques Simard; Francine Durocher
Journal:  Eur J Hum Genet       Date:  2006-07-26       Impact factor: 4.246

6.  Deploying whole genome sequencing in clinical practice and public health: meeting the challenge one bin at a time.

Authors:  Jonathan S Berg; Muin J Khoury; James P Evans
Journal:  Genet Med       Date:  2011-06       Impact factor: 8.822

  6 in total
  6 in total

1.  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

Review 2.  Disclosure of incidental findings from next-generation sequencing in pediatric genomic research.

Authors:  Ruqayyah Abdul-Karim; Benjamin E Berkman; David Wendler; Annette Rid; Javed Khan; Tom Badgett; Sara Chandros Hull
Journal:  Pediatrics       Date:  2013-02-11       Impact factor: 7.124

3.  A Prospective Study of Parental Perceptions of Rapid Whole-Genome and -Exome Sequencing among Seriously Ill Infants.

Authors:  Julie A Cakici; David P Dimmock; Sara A Caylor; Mary Gaughran; Christina Clarke; Cynthia Triplett; Michelle M Clark; Stephen F Kingsmore; Cinnamon S Bloss
Journal:  Am J Hum Genet       Date:  2020-11-05       Impact factor: 11.025

4.  Management of Incidental Findings in the Era of Next-generation Sequencing.

Authors:  Heather L Blackburn; Bradley Schroeder; Clesson Turner; Craig D Shriver; Darrell L Ellsworth; Rachel E Ellsworth
Journal:  Curr Genomics       Date:  2015-06       Impact factor: 2.236

5.  Emerging issues in paediatric health research consent forms in Canada: working towards best practices.

Authors:  Edward S Dove; Denise Avard; Lee Black; Bartha M Knoppers
Journal:  BMC Med Ethics       Date:  2013-01-30       Impact factor: 2.652

6.  To disclose, or not to disclose? Context matters.

Authors:  Vasiliki Rahimzadeh; Denise Avard; Karine Sénécal; Bartha Maria Knoppers; Daniel Sinnett
Journal:  Eur J Hum Genet       Date:  2014-06-11       Impact factor: 4.246

  6 in total

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