American Journal of Bioethics 19 (5):6-18 (2019)
Abstract |
Data documenting poor understanding among research participants and real-time efforts to assess comprehension in large-scale studies are focusing new attention on informed consent comprehension. Within the context of biobanking consent, we previously convened a multidisciplinary panel to reach consensus about what information must be understood for a prospective participant’s consent to be considered valid. Subsequently, we presented them with data from another study showing that many U.S. adults would fail to comprehend the information the panel had deemed essential. When asked to evaluate the importance of the information again, panelists’ opinions shifted dramatically in the direction of requiring that less information be understood. Follow-up interviews indicated significant uncertainty about defining a threshold of understanding and what should happen when prospective participants are unable to grasp key information. These findings have important implications for urgently needed discussion of whether...
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DOI | 10.1080/15265161.2019.1587031 |
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References found in this work BETA
Bench to Bedside: Mapping the Moral Terrain of Clinical Research.Steven Joffe & Franklin G. Miller - 2008 - Hastings Center Report 38 (2):30-42.
Understanding, Interests and Informed Consent: A Reply to Sreenivasan.Danielle Bromwich - 2015 - Journal of Medical Ethics 41 (4):327-331.
What Should Research Participants Understand to Understand They Are Participants in Research?David Wendler & Christine Grady - 2008 - Bioethics 22 (4):203–208.
Discrepancy Between Participants' Understanding and Desire to Know in Informed Consent: Are They Informed About What They Really Want to Know?Jiwon Koh, Eurah Goh, Kyung-Sang Yu, Belong Cho & Jeong Hee Yang - 2012 - Journal of Medical Ethics 38 (2):102-106.
Improving Informed Consent: The Medium Is Not the Message.Patricia Agre, Frances A. Campbell, Barbara D. Goldman, Maria L. Boccia, Nancy Kass, Laurence B. McCullough, Jon F. Merz, Suzanne M. Miller, Jim Mintz & Bruce Rapkin - 2003 - IRB: Ethics & Human Research 25 (5):S11.
Citations of this work BETA
Informed Consent: What Must Be Disclosed and What Must Be Understood?Joseph Millum & Danielle Bromwich - 2021 - American Journal of Bioethics 21 (5):46-58.
Structural Racism in the COVID-19 Pandemic: Moving Forward.Maya Sabatello, Mary Jackson Scroggins, Greta Goto, Alicia Santiago, Alma McCormick, Kimberly Jacoby Morris, Christina R. Daulton, Carla L. Easter & Gwen Darien - 2021 - American Journal of Bioethics 21 (3):56-74.
Moving From Understanding of Consent Conditions to Heuristics of Trust.Michael M. Burgess & Kieran C. O’Doherty - 2019 - American Journal of Bioethics 19 (5):24-26.
From “Informed” to “Engaged” Consent: Risks and Obligations in Consent for Participation in a Health Data Repository.Elizabeth Bromley, Alexandra Mendoza-Graf, Sandra Berry, Camille Nebeker & Dmitry Khodyakov - 2020 - Journal of Law, Medicine and Ethics 48 (1):172-182.
Informed Consent: A Matter of Aspiration Since 1966.Sarah Wieten, Jacob Blythe & David Magnus - 2019 - American Journal of Bioethics 19 (5):3-5.
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