Journal of Law, Medicine and Ethics 43 (3):514-522 (2015)
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 chairs to this issue and their opinions as to the role of the REB in developing related policy
|
Keywords | No keywords specified (fix it) |
Categories | (categorize this paper) |
DOI | 10.1111/jlme.12293 |
Options |
![]() ![]() ![]() ![]() |
Download options
References found in this work BETA
Additional Protocol to the Convention on Human Rights and Biomedicine, Concerning Biomedical Research.Council of Europe - 2005 - Jahrbuch für Wissenschaft Und Ethik 10 (1):391-402.
Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.Susan M. Wolf, Rebecca Branum, Barbara A. Koenig, Gloria M. Petersen, Susan A. Berry, Laura M. Beskow, Mary B. Daly, Conrad V. Fernandez, Robert C. Green, Bonnie S. LeRoy, Noralane M. Lindor, P. Pearl O'Rourke, Carmen Radecki Breitkopf, Mark A. Rothstein, Brian Van Ness & Benjamin S. Wilfond - 2015 - Journal of Law, Medicine and Ethics 43 (3):440-463.
An Implementation Framework for the Feedback of Individual Research Results and Incidental Findings in Research.Adrian Thorogood, Yann Joly, Bartha Maria Knoppers, Tommy Nilsson, Peter Metrakos, Anthoula Lazaris & Ayat Salman - 2014 - BMC Medical Ethics 15 (1):88.
Are Changes to the Common Rule Necessary to Address Evolving Areas of Research? A Case Study Focusing on the Human Microbiome Project.Diane E. Hoffmann, J. Dennis Fortenberry & Jacques Ravel - 2013 - Journal of Law, Medicine and Ethics 41 (2):454-469.
Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.Laura M. Beskow & P. Pearl O'Rourke - 2015 - Journal of Law, Medicine and Ethics 43 (3):502-513.
View all 7 references / Add more references
Citations of this work BETA
Navigating Social and Ethical Challenges of Biobanking for Human Microbiome Research.Kieran C. O’Doherty, David S. Guttman, Yvonne C. W. Yau, Valerie J. Waters, D. Elizabeth Tullis, David M. Hwang & Kim H. Chuong - 2017 - BMC Medical Ethics 18 (1):1.
Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.Laura M. Beskow & P. Pearl O'Rourke - 2015 - Journal of Law, Medicine and Ethics 43 (3):502-513.
Similar books and articles
Attitudes of Research Ethics Board Chairs Towards Disclosure of Research Results to Participants: Results of a National Survey.S. D. MacNeil & C. V. Fernandez - 2007 - Journal of Medical Ethics 33 (9):549-553.
Informing Research Participants of Research Results: Analysis of Canadian University Based Research Ethics Board Policies.S. D. MacNeil - 2006 - Journal of Medical Ethics 32 (1):49-54.
Disclosure of Research Result to Research Participants: Needs and Attitudes of Adolescents and Parents.Conrad Vincent Fernandez, Shaureen Taweel, Eric D. Kodish & Charles Weijer - unknown
Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.Laura M. Beskow & P. Pearl O'Rourke - 2015 - Journal of Law, Medicine and Ethics 43 (3):502-513.
The Return of Results of Deceased Research Participants.Anne Marie Tassé - 2011 - Journal of Law, Medicine and Ethics 39 (4):621-630.
Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives.Ben Chan, Flavia M. Facio, Haley Eidem, Sara Chandros Hull, Leslie G. Biesecker & Benjamin E. Berkman - 2012 - American Journal of Bioethics 12 (10):1-8.
Familial Communication of Research Results: A Need to Know?Lee Black & Kelly A. McClellan - 2011 - Journal of Law, Medicine and Ethics 39 (4):605-613.
Considerations for Returning Research Results to Culturally Diverse Participants and Families of Decedents.Nanibaa' A. Garrison - 2015 - Journal of Law, Medicine and Ethics 43 (3):569-575.
Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.Susan M. Wolf, Rebecca Branum, Barbara A. Koenig, Gloria M. Petersen, Susan A. Berry, Laura M. Beskow, Mary B. Daly, Conrad V. Fernandez, Robert C. Green, Bonnie S. LeRoy, Noralane M. Lindor, P. Pearl O'Rourke, Carmen Radecki Breitkopf, Mark A. Rothstein, Brian Van Ness & Benjamin S. Wilfond - 2015 - Journal of Law, Medicine and Ethics 43 (3):440-463.
Understanding Incidental Findings in the Context of Genetics and Genomics.Mildred K. Cho - 2008 - Journal of Law, Medicine and Ethics 36 (2):280-285.
Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results After Death of the Subject.Sarah Scollon, Katie Bergstrom, Laurence B. McCullough, Amy L. McGuire, Stephanie Gutierrez, Robin Kerstein, D. Williams Parsons & Sharon E. Plon - 2015 - Journal of Law, Medicine and Ethics 43 (3):529-537.
The Best Interests of the Child and the Return of Results in Genetic Research: International Comparative Perspectives.Ma’N. H. Zawati, David Parry & Bartha Maria Knoppers - 2014 - BMC Medical Ethics 15 (1):72.
Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including After Participant Death: Empirical Results From a Cancer Biobank.Carmen Radecki Breitkopf, Gloria M. Petersen, Susan M. Wolf, Kari G. Chaffee, Marguerite E. Robinson, Deborah R. Gordon, Noralane M. Lindor & Barbara A. Koenig - 2015 - Journal of Law, Medicine and Ethics 43 (3):464-475.
IRB Chairs' Perspectives on Genotype-Driven Research Recruitment.Laura M. Beskow, Emily E. Namey, Patrick R. Miller, Daniel K. Nelson & Alexandra Cooper - 2012 - IRB: Ethics & Human Research 34 (3):1.
Return of Research Results: General Principles and International Perspectives.Emmanuelle Lévesque, Yann Joly & Jacques Simard - 2011 - Journal of Law, Medicine and Ethics 39 (4):583-592.
Analytics
Added to PP index
2015-10-20
Total views
5 ( #1,137,032 of 2,409,593 )
Recent downloads (6 months)
1 ( #540,301 of 2,409,593 )
2015-10-20
Total views
5 ( #1,137,032 of 2,409,593 )
Recent downloads (6 months)
1 ( #540,301 of 2,409,593 )
How can I increase my downloads?
Downloads