NEW YORK, NY - MAY 24, 2020: New York Times newspaper with "U.S. Deaths Near 100,000, An Incalculable Loss" front-page article delivered to front door in Manhattan.

Pandemic Nihilism, Social Murder, and the Banality of Evil

­­By Nate Holdren

Lire en français.

Every day in the pandemic, many people’s lives end, and others are made irrevocably worse.[1]

These daily losses matter inestimably at a human level, yet they do not matter in any meaningful way at all to the public and private institutions that govern our lives. Our suffering is inconsequential to the machinery of power and to those who compose and operate that machinery. This has been the case all along, but in this phase of the pandemic, our suffering has been nihilistically recast as not just inconsequential, but inevitable by the administration and the voices it has cultivated as its proxies. Consider, for example, White House Press Secretary Karine Jean-Pierre’s remarks during President Biden’s July 2022 COVID-19 infection: “As we have said, almost everyone is going to get COVID.”

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Cell culture.

A New Theory for Gene Ownership

By James Toomey

The story of Henrietta Lacks is surely among the most famous in the history of bioethics, and its facts are well-known. Ms. Lacks sought treatment for cervical cancer. After conducting a biopsy on her tumor, her doctors learned that her cancer cells reproduced uniquely effectively. Without her knowledge or consent, her doctors derived from the cells the HeLa cell line — the world’s first immortal human cell line, worth billions and a driver of the biotechnology revolution. Lacks died in poverty.

No doubt her doctors’ behavior was not consistent with today’s standards of informed consent. But another question has remained more persistently challenging — did the doctors steal something from Lacks? Did she own the cells of her tumor? Or, perhaps more precisely, because few argue that HeLa is really the same thing as Lacks’s tumor cells, did she own the genetic information contained in her tumor?

In a new paper, Property’s Boundaries (forthcoming in the Virginia Law Review, March 2023), I develop a theory of what can and cannot be owned to answer these kinds of questions — pervasive in bioethics, from debates about ownership of organs to embryos. My conclusion, in short, is that because the essence of the idea of ownership is a relationship of absolute control, anything that can be the subject of human control can, in principle, be owned. But that which we cannot control we cannot own. From this perspective, Henrietta Lacks owned the cells of her tumor, and the tumor itself. But the genetic information within them — facts about the universe subject to no human control — simply cannot be owned, by her or anyone else.

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Sign at train station in Berlin that describes free support for pet owners coming from Ukraine.

Ethical Challenges Associated with the Protection of Pets in War

(Photo: Sign at the central train station in Berlin (Berlin Hauptbahnhof) that offers free support for pet owners coming from Ukraine. Courtesy of Kristin Sandvik.)

By Kristin Bergtora Sandvik

Introduction

The care for animals rapidly became a part of the humanitarian narrative of the attack on Ukraine.

There are countless accounts of the efforts of activists, shelters and zoo staff to keep animals alive, as well as underground operations to get them to safety. And, as Ukrainians flee for their lives, they are frequently accompanied by their pets.

EU initiatives and advocacy efforts by animal rights groups pushed receiving countries to modify entrance requirements, waive fees, provide veterinary services, and shorten or eliminate quarantine times. The EU announced a special derogation in Regulation 2013/576, allowing the import of Ukrainian refugee pets without meeting standard requirements. Many governments have welcomed Ukrainian pets with or without their owners, and without documentation, rabies vaccine, and/or microchip.

Humanitarian action is typically human centric; this broad societal acceptance of pets as legitimate refugee companions, and the attendant rapid regulatory accommodations, are unique developments. In this blog, I draw on perspectives from disaster studies, international humanitarian law (IHL), refugee studies, and animal studies to articulate a set of ethical dilemmas around classification and policymaking that arise when pets are recognized as a humanitarian protection problem.

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Open front door.

Re-Imagining Work in the Post-Pandemic Era: An Arendtian Lens

By Xochitl L. Mendez

The coronavirus pandemic changed the world in countless ways, and for a moment it challenged the pre-pandemic separation of — in Hannah Arendt’s terms — the Private and the Public. To Arendt, the Public is defined as the sole realm where a human can live in full, as a person integral and part of a community as an equal. Being human is only fully procurable by the presence that a person achieves when acting among others. Contrastingly, to Arendt the Private is a shadowy space without the sufficient worth to merit “being seen or heard” by others. The Private is also the place where toiling with the endless necessities of providing for one’s body resides.

The COVID-19 pandemic challenged this separation. As many people and their loved ones fell seriously ill, an overwhelming portion of our nation found themselves for the first time living a struggle that previously was familiar mainly to those who suffer from chronic medical conditions. Millions were locked down and marooned at home — a radically novel experience to many, yet one that is sadly commonplace to a considerable number of individuals who live with disability and illness every day. Large portions of the workforce found themselves restricted to working remotely — a reality habitual to individuals who lack access to the workplace. All of these experiences suddenly stopped being private experiences — they became critical concerns discussed by a citizenry of equals, worth “being seen or heard” by others, and demanding policy and political action.

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Female freelance programmer in modern headphones sitting in wheelchair and using computers while coding web game at home.

Injustice Anywhere: The Need to Decouple Disability and Productivity

By Brooke Ellison

There is a profound need to deconstruct and actively reconstruct the interpretation of disability as it is currently understood.

The current framing of disability as inability — whether an inability to be employed or otherwise — has utterly failed not only people with disabilities, but also the communities in which they live.

This perception of disability is a relic of attitudinal and policy structures put into place by people who do not live with disability themselves: people who may have been ignorant to the virtues that living with disability engenders.

Current calls for attention to a disability bioethics or a disability epistemology have heralded not only highlighting, but also actively promoting, the qualities, leadership skills, and valuable character traits associated with surviving and thriving in a world fundamentally not set up for one’s own needs.

Before any meaningful movement can be made when it comes to the employment of people with disabilities — whether in the form of workplace accommodations, flexible work settings, recruitment practices, or limitations on earnings — the underlying assumption about the value of their presence in the workforce needs to change.

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New York, USA, November 2021: Pfizer Covid-19 Paxlovid treatment box isolated on a white background.

How to Fairly Allocate Scarce COVID-19 Therapies

By Govind Persad, Monica Peek, and Seema Shah

Vaccines are no longer our only medical intervention for preventing severe COVID-19. Over the past few months, we have seen the arrival and wider availability of treatments such as monoclonal antibodies (mAbs), and more recently, of novel oral antiviral drugs like Paxlovid and molnupiravir.

The recent Delta and Omicron surges have made these therapies scarce. The Delta variant led the federal government to resume control over mAb supply and promulgate allocation guidelines. The Omicron variant exacerbated scarcity because only one of the currently available mAbs, sotrovimab, appears to be effective against it. While Paxlovid and molnupiravir are effective against Omicron, both will likely be in short supply for many months. Paxlovid is currently constrained by a lengthy manufacturing process. Molnupiravir — which is substantially less effective — is contraindicated for use in patients under 18 and not recommended for use during pregnancy.

To allocate COVID-19 vaccines, the CDC’s Advisory Committee on Immunization Practices, the National Academies of Sciences, Engineering and Medicine (NASEM), and the World Health Organization (WHO) identified ethical goals for prioritization, such as maximizing benefit and minimizing harm, mitigating health inequities, and reciprocity. These committees, particularly the NASEM and WHO committees, included ethics experts as well as experts in social science, biology, and medicine. Current federal guidelines for therapy allocation, in contrast, do not identify ethical objectives or involve ethics expertise.

In an open-access Viewpoint in Clinical Infectious Diseases, we identify ethical goals for the allocation of scarce therapies. We argue that the same ethical goals identified for vaccine allocation–in particular maximizing benefit, minimizing harm, and mitigating health inequities — are also relevant for therapy allocation. Because many people have now taken steps to mitigate pandemic scarcity, for instance by protecting themselves through vaccination, we argue that reciprocity is also relevant.

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Colorful lottery balls in a rotating bingo machine.

Equalizing the Genetic Lottery?

By James Toomey

Kathryn Paige Harden’s The Genetic Lottery: Why DNA Matters for Social Equality is a thoughtful, thorough, and well-written book about the compatibility of behavioral genetics with progressive ideology. Weaving together her own fascinating work in genetics with Rawlsian political philosophy, Harden’s book is necessary reading for anyone interested in inheritance or politics — which, I suppose, is everyone.

The basic argument of the book is that the so-called First Law of Behavioral Genetics is correct — everything is heritable. Harden supports this claim with a wealth of research in genetics over the past few decades, with an emphasis on her own contributions (“within a group of children who are all in school, nearly all of the differences in general [executive function] are estimated to be due to the genetic differences between them”). More importantly, Harden does not think this fact has the implications for normative politics that many, particularly on the left, worry it does. The fact that some genetic profiles cause higher general intelligence — or anything else — does not mean those who have them are better or more deserving of society’s bounty and social prestige. We can, and should, adopt “anti-eugenic” policies designed to make better as much as possible the lives of the genetically “unluckiest.”

Accepting Harden’s descriptive premises, I find her political theory basically right. But the book elides a crucial distinction in left-leaning political thought that, I think, misses something about why so many on the left find the prospect of the heritability of mental characteristics so troubling, and which perhaps diminishes the book’s ability to persuade its target audience (which, frankly, is not me, having been already convinced on much of this by The Blank Slate).

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Call from unknown number on iPhone.

The Surprising Shape of COVID Fraud

By James Toomey

When the world went into lockdown in March 2020, many commentators noticed that social isolation could offer scammers an unprecedented opportunity to take advantage of people’s fear and loneliness. But they didn’t anticipate that fraud would generally affect a range of age groups. Indeed, much like the virus itself, the risks of frauds and scams related to the COVID pandemic were thought primarily to affect older adults.

This assumption seems to have been wrong. Recently, I conducted a study on the prevalence of scam-victimization during the pandemic across age groups. Specifically, I recruited two populations — one of adults between 25 and 35 and one of adults over than 65—and asked whether they had been contacted by people making specific fraudulent promises during the pandemic, and whether they’d engaged with the scammer by giving personal information, sending money, or clicking a link. In the study populations, the younger group engaged with scammers three times more frequently than the older group — a disparity that was statistically significant and persisted regardless of how I sliced the data.

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Close up view of graduation hat on dollar banknotes. Tuition fees concept.

Becoming a Bioethicist is Expensive. That’s a Problem.

By Leah Pierson

The financial barriers associated with becoming a bioethicist make the field less accessible, undermining the quality and relevance of bioethics research.

Because the boundaries of the field are poorly defined, credentials often serve as a gatekeeping mechanism. For instance, the recent creation of the Healthcare Ethics Consultant-Certified (HEC-C) program, which “identifies and assesses a national standard for the professional practice of clinical healthcare ethics consulting” is a good idea in theory. But the cost of the exam starts at $495. There is no fee assistance. Given that 99 percent of those who have taken the exam have passed, the exam seems to largely serve as a financial barrier to becoming an ethics consultant.

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People protesting with signs that say "healthcare is a human right" and "medicare for all."

Why We Need a Transformative Right-to-Health Pandemic Treaty Now

By Martín Hevia and Ximena Benavides

Acknowledging what went wrong during the COVID-19 pandemic is crucial to any pandemic lawmaking efforts. Chief among these concerns should be the centrality of human rights to global health security.

Health systems that lack universality and inclusivity will always fall short on disease surveillance, detection, and response during health emergencies, at the risk of not reaching all populations. The risk of exclusion exceeds national borders. Regional and global health governance favor the ‘competition of a few’ over (formal) solidarity, which explains why some of the small number of international collaborative initiatives aiming to reach the poorest countries during the pandemic are falling short.

Nonetheless, human rights remain at the periphery of the global health security conversation and the pandemic treaty debate.

Following the call of dozens of world leaders for a new treaty or another legally binding instrument to strengthen pandemic preparedness and response, the World Health Assembly will convene a special session in November 2021 to consider a new binding agreement that could address key failings in the COVID-19 response, including the insufficient international cooperation to implement the International Health Regulations’ (2005) public health capacities. Such an initiative should also serve as the long-awaited international policy-making window to address our health systems’ deep structural problems.

How can a pandemic treaty positively transform our health systems? In this contribution, we outline four core strategies.

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