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03/27/2020 - 12:19pm

Presented in conjunction with the American Journal of Bioethics. You can see the April 2020 issue by clicking here.

by Nanette Elster & Kayhan Parsi

We live in a representative democracy. We presumably have the franchise to elect who will represent our interests. Moreover, we live in a society with a range of organizations that advocate for certain causes and represent the interests of a variety of stakeholders. The autism “community” is no different. Yet, no monolithic set of interests represents all the members of the autism community.…

03/27/2020 - 12:15pm

Presented courtesy of the American Journal of Bioethics. You can see the April 2020 issue by clicking here. 

by Jordan P. Richardson & Richard R. Sharp

Patient advocacy organizations emerged in the 1950s to collectivize patient power and promote patient’s shared interests and rights. Since that time, patient advocacy organizations have grown in number and influence, filling an assortment of roles that include increasing public awareness, providing support to patients and families, building community, and advocating for research. It is their role in political activism that McCoy et al.…

03/27/2020 - 12:01pm

I welcome Dr. Françoise Baylis, University Research Professor at the NTE Impact Ethics interdisciplinary research team based at the Faculty of Medicine, Dalhousie University in Halifax Canada. She is a member of the Order of Canada and the Order of Nova Scotia, as well as a Fellow of the Royal Society of Canada and a Fellow of the Canadian Academy of Health Sciences. In 2017 she was awarded the Canadian Bioethics Society Lifetime Achievement Award. She is a distinguished researcher and prolific scholar with 200 or so books, refereed publications and chapters to her name. Her latest book published by Harvard University Press is Altered Inheritance: CRISPR and the Ethics of Human Genome Editing. At the time of recording we knew the book had been nominated for an Association of American Publishers Professional and Scholarly Excellence (or PROSE) award, which it subsequently won!

The Week in Health Law Podcast from Nicolas Terry is a commuting-length discussion about some of the more thorny issues in health law and policy. Subscribe at Apple Podcasts or Google Play, listen at Stitcher Radio, SpotifyTunein or Podbean.

Show notes and more are at If you have comments, an idea for a show or a topic to discuss you can find me on Twitter @nicolasterry or @WeekInHealthLaw.

The post New TWIHL with Françoise Baylis appeared first on Bill of Health.

03/27/2020 - 8:48am

As the U.S. health care system faces the strain of responding to the coronavirus pandemic, critical services are being provided by international medical graduates, who, in the years and months leading up to this crisis, have found their capacity to contribute limited by increasingly restrictive immigration policies. International medical graduates, physicians trained in other countries,… Read more

The post We Need International Medical Graduates to Help Fight Covid-19. Immigration Policies Keep Them Away appeared first on The Hastings Center.

03/27/2020 - 7:00am

By Alicia Ely Yamin and Ole F. Norheim

Scholarly and official statements and publications regarding human rights during the current pandemic have largely reiterated the important lessons learned from HIV/AIDS, Zika and Ebola, such as: engagement with affected communities; combatting stigma and discrimination; ensuring access for the most vulnerable; accounting for gendered effects; and limiting rights restrictions in the name of public health.

But there is a notable silence as to one of the most critical decisions that almost every society will face during the COVID-19 pandemic: rationing scarce health care resources and access to care.

The failure to engage directly with the most difficult questions of tradeoffs implies that “human rights-based approaches” and mantras invoking a “right to health” somehow allow us to avoid facing these life and death dilemmas.

This stance makes human rights principles irrelevant to some of the most pressing issues health systems are now facing. Not acknowledging the need for rationing is akin to abdication to the market, as those with power, money, privilege and other sources of status will be the ones who get access to tests, treatments, ICU beds, and ventilators.

The point of a right to health, in “normal” times as well as in crisis, is that inevitable rationing be done fairly and transparently, in accordance with democratic principles of equal concern and respect. The following three human rights-based imperatives offer public health and medical ethics guidelines with respect to rationing within our health systems.

1. Treat diverse people with equal concern and respect. The bedrock of human rights calls for vigilance against discrimination in information, testing, and treatment for COVID-19 (on the basis of gender, religion, sexual orientation, disability, race, ethnicity, and, importantly income and socioeconomic status). Equal concern and respect calls for universal access to the health system, so that everyone has equal chances for consideration, which as Spain and Ireland have just shown can be done quickly with effective political leadership.

Equal concern is also violated if a COVID-19 patient gets care by displacing others with similarly grave or more serious conditions who could benefit more.

2. Maximize benefits. If the dignity of each human being demands equal concern and respect, maximizing the clinical benefits to the greatest number of people must be our ethical starting point. Take this grim, but realistic example: If survival probability is 50 percent for one patient who needs a ventilator and 20 percent for another, it would violate equal concern to choose the patient where the expected benefit is lower.

Ranking of patients by expected benefit is not only important for access to intensive care. Maximizing benefits applies when choosing whom to test, treat or refer to hospitals. It applies to ensuring health personnel preferential treatment in pandemic situations because without them, others would likely be worse off. It applies when government officials must choose among policies to protect health system capacity, including allocations of scarce health resources among sub-national areas. And if a vaccine becomes available, health maximization would dictates that priority should be given to high-risk and vulnerable groups, because protecting them entirely from infection would yield the maximum benefit.

Health maximization is not simple to apply in practice. Critically, this imperative coexists with the overarching human rights principle of equal concern and respect as set out above.  In the broader policy space, the principles of equal concern and health maximization call for buffering the unequally distributed adverse impacts of the epidemic on social determinants of health.

3. Rationing criteria must be democratically legitimated. The essence of human rights—and democracy– is that governments should be held accountable for justifying their (non) actions and the basis for their decisions (and those they regulate in the private sector).

Decisions about rationing should not be made by technical experts behind closed doors, following opaque criteria that vary across hospitals, as is occurring now. Transparency, user involvement, and public deliberation about goals, principles, and guidelines for rationing are essential for trust and legitimacy in health systems and in our broader governments.

Accepting the reality of rationing, from the micro-level to the macro-level of financing and structuring systems, in no way implies foregoing scrutiny of any given decision, policy or budget.

The public needs to understand that avoiding explicit rationing in a time of crisis can cause major loss of health in the population, and in practice is likely to favor the rich and powerful.

Talking about rationing in an open, evidence-based and responsible way can promote processes and principles that people understand as legitimate—and may produce important revisions of policy based on considerations raised, such as giving extra priority to the worst off.

Even during a crisis—especially during widespread “lockdowns”– virtual town halls and public service programming on radio call-in shows could be key tools in extending such dialogues beyond those that may be occurring between doctors and family members.

Legitimate processes reinforce democratic trust. At the same time,  for people to accept rationing as legitimate in crises and beyond, people need to trust government officials—both within the health system and more broadly.

Admittedly, we face an extreme challenge in a world where governments have undermined public trust for decades.  Nonetheless, if we now insist upon these rights-based imperatives, one positive outcome of the current pandemic might be that we understand better that health is a matter of democracy and health systems are fundamental social institutions. This crisis also provides an opportunity to reconsider how health rights have generally been theorized, too often untethered from democratic theory as well as the informal rules that shape how they function in health professionals’ and patients’ daily lives.

As South African Constitutional Court Justice, Albie Sachs, noted of health rights, “When rights by their very nature are shared and inter-dependent, striking appropriate balances between the equally valid entitlements or expectations of a multitude of claimants should not be seen as imposing limits on those rights . . . but as defining the circumstances in which the rights may most fairly and effectively be enjoyed.”


Alicia Ely Yamin is a Senior Fellow at Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics, Harvard Law School, and a Human Rights Advisor at the Bergen Centre for Ethics and Priority-Setting (BCEPS).

Ole F. Norheim is Director of the Bergen Centre for Ethics and Priority-Setting (BCEPS), University of Bergen, where he is also a professor, and an adjunct professor at the Harvard T.H Chan School of Public Health.

The post 3 Human Rights Imperatives for Rationing Care in the Time of Coronavirus appeared first on Bill of Health.

03/27/2020 - 6:48am

While the COVID-19 pandemic is terrible for the economy and for the 5% of infected individuals who require critical care, news sources are reporting that the pandemic has benefits too.

First, Americans typically do not plan for death, because they do ...

03/27/2020 - 6:48am

While the COVID-19 pandemic is terrible for the economy and for the 5% of infected individuals who require critical care, news sources are reporting that the pandemic has benefits too.

First, Americans typically do not plan for death, because they do ...

03/27/2020 - 6:48am

While the COVID-19 pandemic is terrible for the economy and for the 5% of infected individuals who require critical care, news sources are reporting that the pandemic has benefits too.

03/27/2020 - 4:00am

This essay was the winning entry in the graduate category of the 6th Annual Oxford Uehiro Prize in Practical Ethics. Written by University of Oxford student, Maya Krishnan.   Introduction Late one night in Managua, Nicaragua, a man punched Leslie Jamison in the face and then ran away with her camera. Jamison called the police. […]

03/27/2020 - 1:30am

“Exploring ethical issues in TV medical dramas”

by Craig Klugman, Ph.D.

The Resident (Seasons 3; Episode 18): Maintaining the Dead; The Resident (Season 3; Episode 19): Lies, Coverups, Crossing Boundaries; Chicago Med (Season 5; Episode 17): Required Criminal Reporting; Chicago Med (Season 5; Episode 18):Advance Directives and Alzheimer’s; Innovation v. Best Care; Jealousy or Abuse

The Resident (Seasons 3; Episode 18): Maintaining the Dead

Dawn Long is a former patient from early this season who reappears. She had the Mother of All Surgeries that left her in a persistent vegetative says and has been in and out of Chastain for treatment and stabilization.…