RESTRICTIONS OF INDIVIDUAL RIGHTS
These articles relate to the ways in which public health and medical interventions may limit individual liberties and/or other rights in the COVID19 pandemic. As the pandemic unfolds, so does the content on this website. Please share and visit often.
A Politics-free Path to a COVID-19 Vaccine
Physicians for Human Rights; October 30, 2020
This report, co-authored by Matthew Wynia, MD, MPH, concludes that political considerations must not be allowed to taint the process of ensuring the safety and efficacy – and subsequent equitable access to and distribution of – vaccines and therapeutics to prevent and mitigate harms from COVID-19. It will only be possible to successfully contain, prevent, and treat communicable diseases – or any public health challenge – if there is public confidence in the integrity and transparency of the scientific process.
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Recommended by Meleah Himber.
My Mother is Busy Getting Ready to Die
New York Times; April 22, 2020
LeRhonda S. Manigault-Bryant demands our attention. She describes the terrible reality of her mother’s painful dying and imminent death, a death that has everything and nothing to do with Covid-19. In an opinion piece for the New York Times with the heartbreaking title, “My Mother is Busy Getting Ready to Die,” she writes that her mother is a living example of what we already know about race, class, and suffering and that her mother’s body is the body of all black people at the bottom of the pandemic. Professor Manigault-Bryant has also produced a powerful video about her mother, titled Death. Everything. Nothing for Independent Shorts Awards. While both essay and film are challenging to sit with in these harsh times, it is our responsibility to bear witness.
Recommended by Tess Jones.
Public attitudes toward allocating scarce resources in the COVID-19 pandemic
PLOS ONE; November 4, 2020
This article that uses a relatively novel approach to better understand public views of ethical issues in crisis triage. They use methods derived from experimental social psychology and find that Americans tend to favor triage protocols that prioritize the worst off, and that we are generally willing to accept some tradeoffs of utility and equity to help address disadvantages faced by communities of color. The findings are nuanced and will be of interest to those working on triage protocols, especially as we face new and worse surges of COVID-19 cases.
Recommended by Matthew Wynia and Christine Baugh.
Structural Stigma, Legal Epidemiology, and COVID-19: The Ethical Imperative to Act Upstream
Kennedy Institute of Ethics Journal; June 23, 2020.
This paper by Daniel Goldberg presents a clear and compelling description of “legal epidemiology.” The discussion of stigma is good (he’s always good on that) and the pieces on the history of plagues are terrific (he’s an historian, so what would you expect?). But I loved his brief description of laws and policies as social determinants of health, which “can fairly be regarded as epidemiologic exposures akin to any other (e.g., toxicants, tobacco and hazardous working conditions)” and which can and should be categorized, bundled for implementation, and tracked for health impacts.
Recommended by Matthew Wynia.
On Becoming a Plague Doctor
New England Journal of Medicine; May 20, 2020.
In this personal perspective piece, Mark Earnest, MD, PhD reflects on the loss of “the intimacy of patient care” during the COVID pandemic. He invokes images from the Middle Ages when plague doctors wore costumes that included protective suits and beaked masks to protect themselves. To Dr. Earnest, “the image represented the triumph of fear and superstition over the more noble impulses I hoped would drive me in a time of crisis.” When in March 2020, he found himself covered in personal protective equipment preparing to meet a patient, he “stood for the first time outside the door of a patient who I suspected had Covid-19. I was wearing two layers of gloves, a gown, an N95 mask, and goggles. While taking her history and examining her, I felt a wave of guilt and a sense that I was betraying something important.” In this thought-provoking essay, Dr. Earnest explores how these new barriers effect his experience as a health care worker and also describes how being present to care for patient is paramount.
Annotation: John Reilly.
UN Report on the Rights of Persons with Disabilities
Human Rights Council of the UN General Assembly; March 20, 2020.
A study on the impact of ableism in medical and scientific practice…The report contains recommendations to assist States to develop and implement legal and policy reforms oriented to embracing disability as part of human diversity, in line with the standards set forth in the Convention on the Rights of Persons with Disabilities. They include adopting measures to raise awareness, implementing rights-based prevention policies, respecting and protecting personal autonomy, the right to life and the right to personal integrity of persons with disabilities, and promoting their participation in decision-making, especially during the COVID-19 pandemic.
Annotation: from the Report Summary.
Respecting Disability Rights — Toward Improved Crisis Standards of Care
New England Journal of Medicine; May 19, 2020.
This NEJM perspective article underscores the ethical obligation of the healthcare system to honor commitments to equally and fairly value the lives of people with disabilities when planning for crisis standards of care and allotment of scarce resources. It explores problems with existing discriminatory codes in certain states such as Utah, Alabama, and Pennsylvania and how they have been challenged, revised and revoked in response to a need for clear and equitable triage guidelines around the COVID-19 pandemic, with a special emphasis on the ethical justification for including near term prognosis in triage scoring systems. It concludes with six practical guideposts that States and hospitals should consider when creating, reviewing or revising triage and crisis standards of care protocols.
Annotation: Meleah Himber.
UK Program for Bioethics Educational Resource on Pandemic Ethics
University of Kentucky Program for Bioethics & The UK Healthcare Ethics Committee; March 19, 2020.
The UK Program for Bioethics Educational Resource on Pandemic Ethics summarizes the history of pandemic ethics and ethical issues and principles in a pandemic. This comprehensive, evidence-based resource could be a useful tool for decision-making and planning in the COVID-19 pandemic. It includes links to pandemic ethics plans for resource allocation from Arizona, Maryland, Michigan, Tennessee, and Utah, as well as ethical framework for pandemic preparedness that public health practitioners, researchers, and students, ethics consultants, healthcare workers, and policy makers may find useful.
Annotation: Angela Lee-Winn.
Beyond liberty: social values & public health ethics in responses to COVID-19
Nuffield Council of Bioethics; March 26, 2020.
This document is an opinion piece by a British lawyer who is hoping to convince colleagues in the Nuffield Council on Bioethics that individual liberty
(freedom from government interference) must yield to social or public health ethical and policy considerations in the face of this pandemic. The author
articulates the view that we all are part of a society struggling for collective survival and, therefore, must concede unfettered individual liberty to the good
of the whole in accepting some constraints, for example, lockdown. This is a useful resource to reinforce social ethics of collective action in contrast to each individual acting on personal behalf.
Annotation: Don Parsons
Rapid Policy Briefing: Ethical considerations in responding to the COVID-19 pandemic
Nuffield Council on Bioethics; March 17, 2020.
This Rapid Policy Briefing is dated 3.17.2020, which means it is not fully current on the significant changes in UK policy that the government initiated in
the ensuing weeks (including full stay-at-home orders). Nevertheless, it highlights values central to effective public health responses (trust and solidarity),
and focuses much more on public health interventions than questions of clinical care and triage ethics. The discussion on solidarity is especially
important and is developed more in this policy briefing than in many other ethics resources I have seen specifically focused on COVID19.
Annotation: Daniel Goldberg