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Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles
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 issuesOther Versions
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Citations of this work
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.
‘ It is a complex process, but it’s very important to return these results to participants’. Stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV.Sylvia Nabukenya, David Kyaddondo, Adelline Twimukye, Ian Guyton Munabi, Catriona Waitt & Erisa S. Mwaka - 2024 - Research Ethics 20 (2):363-387.
References found in this work
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.
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