Maureen Kelley, Cyan James, Stephanie Alessi Kraft, Diane Korngiebel, Isabelle Wijangco, Emily Rosenthal, Steven Joffe, Mildred K. Cho, Benjamin Wilfond & Sandra Soo-Jin Lee
American Journal of Bioethics 15 (9):4-17 (2015)
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Abstract |
We conducted focus groups to assess patient attitudes toward research on medical practices in the context of usual care. We found that patients focus on the implications of this research for their relationship with and trust in their physicians. Patients view research on medical practices as separate from usual care, demanding dissemination of information and in most cases, individual consent. Patients expect information about this research to come through their physician, whom they rely on to identify and filter associated risks. In general, patients support this research, but worry that participation in research involving randomization may undermine individualized care that acknowledges their unique medical histories. These findings suggest the need for public education on variation in practice among physicians and the need for a collaborative approach to the governance of research on medical practices that addresses core values of trust, transparency, and partnership
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DOI | 10.1080/15265161.2015.1062163 |
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References found in this work BETA
An Ethics Framework for a Learning Health Care System: A Departure From Traditional Research Ethics and Clinical Ethics.Ruth R. Faden, Nancy E. Kass, Steven N. Goodman, Peter Pronovost, Sean Tunis & Tom L. Beauchamp - 2013 - Hastings Center Report 43 (s1):16-27.
The Research‐Treatment Distinction: A Problematic Approach for Determining Which Activities Should Have Ethical Oversight.Nancy E. Kass, Ruth R. Faden, Steven N. Goodman, Peter Pronovost, Sean Tunis & Tom L. Beauchamp - 2013 - Hastings Center Report 43 (s1):4-15.
Can RESEARCH and CARE Be Ethically Integrated?Emily A. Largent, Steven Joffe & Franklin G. Miller - 2011 - Hastings Center Report 41 (4):37-46.
Bench to Bedside: Mapping the Moral Terrain of Clinical Research.Steven Joffe & Franklin G. Miller - 2008 - Hastings Center Report 38 (2):30-42.
Patients' Views on Identifiability of Samples and Informed Consent for Genetic Research.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 - American Journal of Bioethics 8 (10):62-70.
Citations of this work BETA
When Is It Ethical for Physician-Investigators to Seek Consent From Their Own Patients?Stephanie R. Morain, Steven Joffe & Emily A. Largent - 2019 - American Journal of Bioethics 19 (4):11-18.
Justifying Investigator/Clinician Consent When The Physician-Patient Relationship Can Support Better Research Decision-Making.Benjamin S. Wilfond & Kathryn M. Porter - 2019 - American Journal of Bioethics 19 (4):26-28.
Learning Is Not Enough: Earning Institutional Trustworthiness Through Knowledge Translation.Stephanie R. Morain, Nancy E. Kass & Ruth R. Faden - 2018 - American Journal of Bioethics 18 (4):31-34.
Bridging the Researcher-Participant Gap: A Research Agenda to Build Effective Research Relationships.Stephanie A. Kraft, Devan M. Duenas, Hannah Lewis & Seema K. Shah - 2020 - American Journal of Bioethics 20 (5):31-33.
Patients' Views Concerning Research on Medical Practices: Implications for Consent.Kevin P. Weinfurt, Juli M. Bollinger, Kathleen M. Brelsford, Travis J. Crayton, Rachel J. Topazian, Nancy E. Kass, Laura M. Beskow & Jeremy Sugarman - 2016 - Ajob Empirical Bioethics 7 (2):76-91.
View all 17 citations / Add more citations
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