David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Ezio Di Nucci
Jonathan Jenkins Ichikawa
Jack Alan Reynolds
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American Journal of Bioethics 6 (6):8 – 17 (2006)
Investigators and institutional review boards should integrate plans about the appropriate disclosure of individual genetic results when designing research studies. The ethical principles of beneficence, respect, reciprocity, and justice provide justification for routinely offering certain results to research participants. We propose a result-evaluation approach that assesses the expected information and the context of the study in order to decide whether results should be offered. According to this approach, the analytic validity and the clinical utility of a specific result determine whether it should be offered routinely. Different results may therefore require different decisions even within the same study. We argue that the threshold of clinical utility for disclosing a result in a research study should be lower than the threshold used for clinical use of the same result. The personal meaning of a result provides additional criteria for evaluation. Finally, the context of the study allows for a more nuanced analysis by addressing the investigators' capabilities for appropriate disclosure, participants' alternative access to the result, and their relationship with the investigators. This analysis shows that the same result may require different decisions in different contexts.
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References found in this work BETA
Henry S. Richardson & Leah Belsky (2004). The Ancillary‐Care Responsibilities of Medical Researchers: An Ethical Framework for Thinking About the Clinical Care That Researchers Owe Their Subjects. Hastings Center Report 34 (1):25-33.
Dena S. Davis (2000). Groups, Communities, and Contested Identities in Genetic Research. Hastings Center Report 30 (6):38-45.
Sara Chandros Hull, Holly Gooding, Alison P. Klein, Esther Warshauer-Baker, Susan Metosky & Benjamin S. Wilfond (2004). Genetic Research Involving Human Biological Materials: A Need to Tailor Current Consent Forms. IRB: Ethics & Human Research 26 (3):1.
Citations of this work BETA
Catherine Gliwa & Benjamin E. Berkman (2013). Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings? American Journal of Bioethics 13 (2):32-42.
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). Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations. Journal of Law, Medicine & Ethics 36 (2):219-248.
Ben Chan, Flavia M. Facio, Haley Eidem, Sara Chandros Hull, Leslie G. Biesecker & Benjamin E. Berkman (2012). Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives. American Journal of Bioethics 12 (10):1-8.
Sassy Molyneux, Stephen Mulupi, Lairumbi Mbaabu & Vicki Marsh (2012). Benefits and Payments for Research Participants: Experiences and Views From a Research Centre on the Kenyan Coast. [REVIEW] BMC Medical Ethics 13 (1):13-.
Sara Chandros Hull, Richard Sharp, Jeffrey Botkin, Mark Brown, Mark Hughes, Jeremy Sugarman, Debra Schwinn, Pamela Sankar, Dragana Bolcic-Jankovic, Brian Clarridge & Benjamin Wilfond (2008). Patients' Views on Identifiability of Samples and Informed Consent for Genetic Research. American Journal of Bioethics 8 (10):62-70.
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