Literature DB >> 26479560

Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families.

Conrad V Fernandez1, P Pearl O'Rourke2, Laura M Beskow3.   

Abstract

Genomic research may uncover results that have direct actionable benefit to the individual. An emerging debate is the degree to which researchers may have responsibility to offer results to the biological relatives of the research participant. In a companion study to one carried out in the United States, we describe the attitudes of Canadian Research Ethics Board (REB) chairs to this issue and their opinions as to the role of the REB in developing related policy.
© 2015 American Society of Law, Medicine & Ethics, Inc.

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Year:  2015        PMID： 26479560      PMCID： PMC4617195          DOI： 10.1111/jlme.12293

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


  56 in total

1.  Guidelines support the return of incidental genomic findings: recommendation suggests that labs should report children’s mutations associated with certain adult-onset diseases.

Authors:  Deborah Levenson
Journal:  Am J Med Genet A       Date:  2013-06       Impact factor: 2.802

Review 2.  Return of individual research results and incidental findings: facing the challenges of translational science.

Authors:  Susan M Wolf
Journal:  Annu Rev Genomics Hum Genet       Date:  2013-07-15       Impact factor: 8.929

3.  Mandatory extended searches in all genome sequencing: "incidental findings," patient autonomy, and shared decision making.

Authors:  Lainie Friedman Ross; Mark A Rothstein; Ellen Wright Clayton
Journal:  JAMA       Date:  2013-07-24       Impact factor: 56.272

4.  Should researchers disclose results to descendants?

Authors:  Mark A Rothstein
Journal:  Am J Bioeth       Date:  2013       Impact factor: 11.229

5.  Relationships matter: ethical considerations for returning results to family members of deceased subjects.

Authors:  Lauren C Milner; Emily Y Liu; Nanibaa' A Garrison
Journal:  Am J Bioeth       Date:  2013       Impact factor: 11.229

6.  Informing family members about a hereditary predisposition to cancer: attitudes and practices among clinical geneticists.

Authors:  Yrrah H Stol; Fred H Menko; Marjan J Westerman; Rien M J P A Janssens
Journal:  J Med Ethics       Date:  2010-07       Impact factor: 2.903

7.  Public opinion about the importance of privacy in biobank research.

Authors:  David J Kaufman; Juli Murphy-Bollinger; Joan Scott; Kathy L Hudson
Journal:  Am J Hum Genet       Date:  2009-10-29       Impact factor: 11.025

Review 8.  Recommendations for returning genomic incidental findings? We need to talk!

Authors:  Wylie Burke; Armand H Matheny Antommaria; Robin Bennett; Jeffrey Botkin; Ellen Wright Clayton; Gail E Henderson; Ingrid A Holm; Gail P Jarvik; Muin J Khoury; Bartha Maria Knoppers; Nancy A Press; Lainie Friedman Ross; Mark A Rothstein; Howard Saal; Wendy R Uhlmann; Benjamin Wilfond; Susan M Wolf; Ron Zimmern
Journal:  Genet Med       Date:  2013-08-01       Impact factor: 8.822

9.  ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing.

Authors:  Robert C Green; Jonathan S Berg; Wayne W Grody; Sarah S Kalia; Bruce R Korf; Christa L Martin; Amy L McGuire; Robert L Nussbaum; Julianne M O'Daniel; Kelly E Ormond; Heidi L Rehm; Michael S Watson; Marc S Williams; Leslie G Biesecker
Journal:  Genet Med       Date:  2013-06-20       Impact factor: 8.822

10.  Attitudes of Canadian researchers toward the return to participants of incidental and targeted genomic findings obtained in a pediatric research setting.

Authors:  Conrad V Fernandez; Caron Strahlendorf; Denise Avard; Bartha M Knoppers; Colleen O'Connell; Eric Bouffet; David Malkin; Nada Jabado; Kym Boycott; Poul H Sorensen
Journal:  Genet Med       Date:  2013-01-31       Impact factor: 8.822
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  6 in total

1.  Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.

Authors:  Laura M Beskow; P Pearl O'Rourke
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

2.  Return of individual research results from genomic research: A systematic review of stakeholder perspectives.

Authors:  Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Mwenza Blell; Isabelle Budin-Ljøsne; Lorraine Cowley; Stephanie O M Dyke; Clara Gaff; Robert Green; Alison Hall; Amber L Johns; Bartha M Knoppers; Stephanie Mulrine; Christine Patch; Eva Winkler; Madeleine J Murtagh
Journal:  PLoS One       Date:  2021-11-08       Impact factor: 3.240

Review 3.  Views on genomic research result delivery methods and informed consent: a review.

Authors:  Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Madeleine J Murtagh
Journal:  Per Med       Date:  2021-04-06       Impact factor: 2.512

4.  Navigating social and ethical challenges of biobanking for human microbiome research.

Authors:  Kim H Chuong; David M Hwang; D Elizabeth Tullis; Valerie J Waters; Yvonne C W Yau; David S Guttman; Kieran C O'Doherty
Journal:  BMC Med Ethics       Date:  2017-01-11       Impact factor: 2.652

5.  Return of genetic and genomic research findings: experience of a pediatric biorepository.

Authors:  Tanya Papaz; Eriskay Liston; Laura Zahavich; Dimitri J Stavropoulos; Rebekah K Jobling; Raymond H Kim; Miriam Reuter; Anastasia Miron; Erwin Oechslin; Tapas Mondal; Lynn Bergin; John F Smythe; Luis Altamirano-Diaz; Jane Lougheed; Roderick Yao; Oyediran Akinrinade; Jeroen Breckpot; Seema Mital
Journal:  BMC Med Genomics       Date:  2019-11-27       Impact factor: 3.063

6.  Stakeholders' perspectives on the post-mortem use of genetic and health-related data for research: a systematic review.

Authors:  Marieke A R Bak; M Corrette Ploem; Hakan Ateşyürek; Marieke T Blom; Hanno L Tan; Dick L Willems
Journal:  Eur J Hum Genet       Date:  2019-09-16       Impact factor: 4.246
  6 in total

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