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The Right to Know: A Revised Standard for Reporting Incidental Findings
Hastings Center Report 48 (2):22-32 (2018)
Abstract
The “best-medical-interests” standard for reporting findings does not go far enough. Research subjects have a right to know about any comprehensible piece of information about them that is generated by research in which they are participating. An even broader standard may sometimes be appropriate: if subjects agree to accept information that they may not understand, then all information may be disclosed.Author Profiles
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Author Profiles
Citations of this work
Ubuntu philosophy and the consensus regarding incidental findings in genomic research: a heuristic approach.Cornelius Ewuoso - 2020 - Medicine, Health Care and Philosophy 23 (3):433-444.
Authority and the Future of Consent in Population-Level Biomedical Research.Mark Sheehan, Rachel Thompson, Jon Fistein, Jim Davies, Michael Dunn, Michael Parker, Julian Savulescu & Kerrie Woods - forthcoming - Public Health Ethics.
Shining a Light also Casts a Shadow: Neuroimaging Incidental Findings in Neuromarketing Research.Owen M. Bradfield - 2021 - Neuroethics 14 (3):459-465.
Differences in Conceptual Understanding of the “Actionability” of Incidental Findings and the Resultant Difference in Ethical Responsibility: An Empirical Study in Japan.Tomohide Ibuki, Keiichiro Yamamoto & Kenji Matsui - 2020 - AJOB Empirical Bioethics 11 (3):187-194.
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.
The right not to know: an autonomy based approach.R. Andorno - 2004 - Journal of Medical Ethics 30 (5):435-439.
Disclosing individual genetic results to research participants.Vardit Ravitsky & Benjamin S. Wilfond - 2006 - American Journal of Bioethics 6 (6):8 – 17.
Ignorance, information and autonomy.John Harris & Kirsty Keywood - 2001 - Theoretical Medicine and Bioethics 22 (5):415-436.
Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings?Catherine Gliwa & Benjamin E. Berkman - 2013 - American Journal of Bioethics 13 (2):32-42.
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