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From “Ought” to “Is”: Surfacing Values in Patient and Family Advocacy in Rare Diseases
American Journal of Bioethics 21 (12):1-3 (2021)
Abstract
In this issue, Lynch and colleagues discuss lessons learned from the “Operation Warp Speed” response to the COVID-19 pandemic in the United States—both about what to do and what not to do fo...My notes
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Citations of this work
Bioethics and the Moral Authority of Experience.Ryan H. Nelson, Bryanna Moore, Holly Fernandez Lynch, Miranda R. Waggoner & Jennifer Blumenthal-Barby - 2022 - American Journal of Bioethics 23 (1):12-24.
Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care.Meghan C. Halley, Colin M. E. Halverson, Holly K. Tabor & Aaron J. Goldenberg - 2023 - American Journal of Bioethics 23 (7):17-26.
An AI Bill of Rights: Implications for Health Care AI and Machine Learning—A Bioethics Lens.Jennifer Blumenthal-Barby - 2022 - American Journal of Bioethics 23 (1):4-6.
Reliance on Advocacy is the Symptom Not the Disease.Lynette Hammond Gerido - 2023 - American Journal of Bioethics 23 (7):86-88.
References found in this work
Helpful Lessons and Cautionary Tales: How Should COVID-19 Drug Development and Access Inform Approaches to Non-Pandemic Diseases?Holly Fernandez Lynch, Arthur Caplan, Patricia Furlong & Alison Bateman-House - 2021 - American Journal of Bioethics 21 (12):4-19.
Facilitating Both Evidence and Access: Improving FDA's Accelerated Approval and Expanded Access Pathways.Holly Fernandez Lynch & Alison Bateman-House - 2020 - Journal of Law, Medicine and Ethics 48 (2):365-372.
Which Orphans Will Find a Home? The Rule of Rescue in Resource Allocation for Rare Diseases.Emily A. Largent & Steven D. Pearson - 2012 - Hastings Center Report 42 (1):27-34.
Another Cautionary Lesson from COVID Research.Christine Grady - 2021 - American Journal of Bioethics 21 (12):36-39.
Physician Responsibility to Discuss Palliative Unproven Therapies With Out-of-Option Patients.Omar Kawam, Jon C. Tilburt & Zubin Master - 2021 - American Journal of Bioethics 21 (12):31-33.
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