Journal of Law, Medicine and Ethics 43 (3):502-513 (2015)
Abstract |
We surveyed IRB chairs' perspectives on offering individual genetic research results to participants and families, including family members of deceased participants, and the IRB's role in addressing these issues. Given a particular hypothetical scenario, respondents favored offering results to participants but not family members, giving choices at the time of initial consent, and honoring elicited choices. They felt IRBs should have authority regarding the process issues, but a more limited role in medical and scientific issues
|
Keywords | No keywords specified (fix it) |
Categories | (categorize this paper) |
DOI | 10.1111/jlme.12292 |
Options |
![]() ![]() ![]() ![]() |
Download options
References found in this work BETA
Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations.Susan M. Wolf, Frances P. Lawrenz, Charles A. Nelson, Jeffrey P. Kahn, Mildred K. Cho, Ellen Wright Clayton, Joel G. Fletcher, Michael K. Georgieff, Dale Hammerschmidt, Kathy Hudson, Judy Illes, Vivek Kapur, Moira A. Keane, Barbara A. Koenig, Bonnie S. LeRoy, Elizabeth G. McFarland, Jordan Paradise, Lisa S. Parker, Sharon F. Terry, Brian Van Ness & Benjamin S. Wilfond - 2008 - Journal of Law, Medicine and Ethics 36 (2):219-248.
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.
A Framework for Analyzing the Ethics of Disclosing Genetic Research Findings.Lisa Eckstein, Jeremy R. Garrett & Benjamin E. Berkman - 2014 - Journal of Law, Medicine and Ethics 42 (2):190-207.
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.
Relationships Matter: Ethical Considerations for Returning Results to Family Members of Deceased Subjects.Lauren C. Milner, Emily Y. Liu & Nanibaa’ A. Garrison - 2013 - American Journal of Bioethics 13 (10):66 - 67.
View all 9 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.
Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families.Conrad V. Fernandez, P. Pearl O'Rourke & Laura M. Beskow - 2015 - Journal of Law, Medicine and Ethics 43 (3):514-522.
Similar books and articles
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.
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.
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.
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.
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.
Understanding Incidental Findings in the Context of Genetics and Genomics.Mildred K. Cho - 2008 - Journal of Law, Medicine and Ethics 36 (2):280-285.
Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families.Conrad V. Fernandez, P. Pearl O'Rourke & Laura M. Beskow - 2015 - Journal of Law, Medicine and Ethics 43 (3):514-522.
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
Offering to Return Results to Research Participants: Attitudes and Needs of Principal Investigators in the Children's Oncology Group.Conrad V. Fernandez, Eric Kodish, Susan Shurin & Charles Weijer - unknown
Genetic Research on Rare Familial Disorders: Consent and the Blurred Boundaries Between Clinical Service and Research.M. Ponder, H. Statham, N. Hallowell, J. A. Moon, M. Richards & F. L. Raymond - 2008 - Journal of Medical Ethics 34 (9):690-694.
Public Expectations for Return of Results From Large-Cohort Genetic Research.Juli Murphy, Joan Scott, David Kaufman, Gail Geller, Lisa LeRoy & Kathy Hudson - 2008 - American Journal of Bioethics 8 (11):36 – 43.
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.
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.
Analytics
Added to PP index
2015-10-20
Total views
9 ( #946,771 of 2,498,175 )
Recent downloads (6 months)
1 ( #427,476 of 2,498,175 )
2015-10-20
Total views
9 ( #946,771 of 2,498,175 )
Recent downloads (6 months)
1 ( #427,476 of 2,498,175 )
How can I increase my downloads?
Downloads