Health Research and Social Justice Philosophy

Situating medical and scientific research within a framework or theory of social justice is long overdue. Attempting to extend principles of research ethics beyond the clinic and lab to other affected people or consequences tolerates or obfuscates injustice. While it must be done, the timescales, methodologies, and commitment to real-world impact are quite different in research ethics versus political philosophy.     

Health for Whom? Bioethics and the Challenge of Justice for Genomic Medicine

The guiding premise from which this special report begins is the conviction and hope that justice is at the normative heart of medicine and that it is the perpetual task of bioethics to bring concerns of justice to bear on medical practice. On such an account, justice is medicine's lifeblood, that by which it contributes to life as opposed to diminishing it. It is in this larger, historical, intersectional, critical, and ethically minded context that we must approach pressing questions facing medicine, including the question of the import and role of genomic knowledge for human life. The second premise is that, at least in principle, the knowledge generated by genomics can be a gift or a weight, or both at the same time. That is to say that, on the one hand, genomic knowledge is a gift, creating novel insights into the genetic drivers of disease and into the geographical paths of our ancestors. And on the other hand, it is a weight, creating new obligations, new forms of social classification, and new forms of surveillance. Because it is in many ways the “common sense” of the day that genomic knowledge is a gift, this special report, which contains nine essays, concentrates on the ways in which such knowledge can be a weight, a weight that has the potential to thwart—and historically has thwarted—medicine from genuinely advancing justice.     

Bioethics and Addiction

Bioethicists have sometimes regarded the opioid epidemic as a problem with obvious answers and thus no need for the field's conceptual analysis. Yet, as three essays in the July-August 2020 issue of the Hastings Center Report demonstrate, the opioid crisis contains a knot of distinctions and puzzles to be sorted out. Travis N. Rieder examines, for example, what is fundamentally driving the crisis—access to the drugs or large societal problems such as poverty and joblessness. The role of choice in addiction, the effects of moral condemnation on approaches to addiction, and what treatment should look like are among the puzzles Hanna Pickard explores, while Daniel S. Goldberg focuses on the common and harmful conflation of the public health problems of substance misuse and pain. These philosophical and bioethical questions point in widely different directions, lying both inside and outside bioethics. They point toward systemic societal factors that determine health and well-being yet have seemed outside bioethics' largely clinical boundaries. And they point toward a deeper look at the very idea of autonomy—an examination of a topic clearly within bioethics yet occurring at the fringes of its usual constructs.     

Why and How Bioethics Must Turn toward Justice: A Modest Proposal

In this essay, I argue that to create a genomics that offers more gifts than weights, central attention must be paid to questions of justice. This will require expanding bioethical imaginations so that they grasp and can respond to questions of structural inequity. It will necessitate building novel coalitions and collaborations that turn the attention of bioethical governance away from narrow individual questions such as, “Do I consent?” and toward the broader collective question, is this just? What kind of lives and collectivities are made possible? What rights and principles should govern them? The essay ends with one example of this novel coalition building arising from the Science and Justice Research Center at the University of California, Santa Cruz. It draws lessons from this effort to build new alliances that bridge the social sciences and natural sciences, arts and engineering, to create new kinds of training and thinking that create a genomics that more adequately responds to fundamental questions of justice.     

The Future of Bioethics: It Shouldn't Take a Pandemic

The Covid-19 pandemic has concentrated bioethics attention on the “lifeboat ethics” of rationing and fair allocation of scarce medical resources, such as testing, intensive care unit beds, and ventilators. This focus drives ethics resources away from persistent and systemic problems—in particular, the structural injustices that give rise to health disparities affecting disadvantaged communities of color. Bioethics, long allied with academic medicine and highly attentive to individual decision-making, has largely neglected its responsibility to address these difficult “upstream” issues. It is time to broaden our teaching, research, and practice to match the breadth of the field in order to help address these significant societal inequities and unmet health needs.     

A Matter of Justice: “Fat” Is Not Necessarily a Bad Word

This essay argues that the discrimination that fat patients face is an issue of health justice. Insofar as this is the case, bioethicists and health care providers should not only care about it but also work to dismantle the systematic, institutional, social, and individual factors that are contributing to it to ensure that fat patients receive high-quality health care, free of stigma and discrimination. The essay discusses a variety of ways in which fat patients are discriminated against and considers the false assumptions that fuel such discrimination. It concludes by considering the structural and social issues that contribute to fatness and pushes health care providers to abandon the assumption that being fat is an individual moral failing. Ultimately, the paper argues, “fat” is not necessarily a bad word, nor one that health care providers should avoid.     

Digital Health Care Disparities

Digital health includes applications for smartphones and smart speakers as well as more traditional ways to access health information electronically, such as through your health care provider's online web‐based patient portal. As the number of digital health offerings—such as smartphone health trackers and web‐based patient portals—grows, what benefit do ethics, or bioethics, perspectives bring to digital health product development? For starters, the field of bioethics is concerned about issues of social justice, including equitable benefit and minimization and fair distribution of the burden of harms. Researchers who employ user‐centered design methods should consider what digital health applications and products would look like if issues like equity and accessibility were foregrounded throughout design and development. One group whose needs are often neglected in the design of digital health products is older adults. Many people anticipate that the digital divide among older adults will close as the current generation of tech‐savvy consumers ages up. But since technology is constantly evolving, this divide may be constantly recreated. As bioethics moves ever further into the technology era, I want it to be mindful of the creation of digital health care disparities.     

Communities Matter

Given the enduring inequities in US health and health care, it is no surprise that particular communities are bearing the disproportionate brunt of the Covid-19 pandemic and our responses to it. Many ethical aspects of the pandemic involve diverse communities bound by race, ethnicity, disability, income, residence, age, and more. How does bioethics engage these communities in theory and in practice? Only faintly, despite Covid-19's relentless reminder that communities matter morally. This article sketches initial directions for developing a community-inclusive bioethics, one that understands communities as critical moral participants in the work of bioethics as well as in health and health care.     

Realigning Pakistan's Bioethics Center during Covid-19

The arrival of the Covid-19 pandemic in Pakistan necessitated that the Centre of Biomedical Ethics and Culture in Karachi realign its activities to changing realities in the country. As Pakistan's only bioethics center, and with no guidelines available for allocation of scarce medical resources, CBEC developed “Guidelines for Ethical Healthcare Decision-Making in Pakistan” with input from medical and civil society stakeholders. The CBEC blog connected to the center's bioethics programs for students from Pakistan and Kenya shifted to Covid-related issues specific to the context of existing social and political realities within these countries. As part of its outreach activities, CBEC initiated a popular Facebook series, #HumansofCovid, as an experience-sharing platform for health care professionals and members of the public. Narratives received vary from those by frustrated physicians under quarantine to those concerning street vendors left jobless and a transsexual person in whose opinion “social distancing” is not a new phenomenon for their communities.     

A Pandemic Diary

In mid-March 2020, The Hastings Center pivoted to work on public health and clinical ethics questions sparked by the Covid-19 pandemic. The Center created a hub page on our website for ethics resources on the pandemic and published the first in a series of Covid-19 ethics frameworks for health care providers. The pandemic has illuminated staggering health inequities, particularly for people of color, prompting the Center to launch a series of webinars called Securing Health in a Troubled Time: Equity, Ethics, & the Common Good.     

A Small-Town Heart

Melanie presented at twenty weeks of gestation to an obstetrics clinic in a critical access hospital in rural Vermont. She was excited to undergo routine fetal ultrasonography, but her obstetrician gave her grave news: the ultrasound revealed hypoplastic left heart syndrome, a devastating congenital heart defect. Initially, Melanie agreed in general to pursue surgical care for her fetus—a three-stage process that has somewhat uncertain results and could only be done in tertiary care facilities far from her home in Vermont. A week later, while the maternal fetal medicine and pediatric cardiology units made arrangements with colleagues in Boston, Melanie began having second thoughts. An ethics meeting was called to discuss conflicting clinician reactions to Melanie's dilemma. Most of the clinicians were stunned that the patient would change her mind. What advice should the ethics consultant offer the team about caring for Melanie?     

Distressed Work: Chronic Imperatives and Distress in Covid-19 Critical Care

This ethnographic study introduces the term “distressed work” to describe the emergence of chronic frictions between moral imperatives for health care workers to keep working and the dramatic increase in distress during the Covid-19 pandemic. Interviews and observant participation conducted in a hospital intensive care unit during the Covid-19 pandemic reveal how health care workers connected job duties with extraordinary emotional, physical, and moral burdens. We explore tensions between perceived obligations of health care professionals and the structural contexts of work. Key findings cluster around the moral imperatives of health care work and the distress that work engendered as work spaces, senses of vocation, patient and family interactions, and end-of-life care shifted. While the danger of working beyond limits has long been an ordinary feature of health care work, it has now become a chronic crisis. Assessing this problem in terms of distressed work and its structural contexts can better address effective, worker-informed responses to current health care labor dilemmas.     

Employment-Based,For-Profit Health Care in a Pandemic

The emergence of Covid-19 in the United States has revealed a critical weakness in the health care system in the United States. The majority of people in the nation receive health care via employment-based health insurance from providers in a competitive market. However, neither employment-based health care nor a competitive health care market can adequately provide treatment during a global pandemic. Employment-based health care will fail to provide care for a large number of people in any destabilizing economic event, including a pandemic. Competitive for-profit health care systems distribute limited goods based on markets rather than health care needs. If a global pandemic results in unusually high demand for specific medical supplies, then these will be distributed suboptimally. The combined risk of suboptimal distribution of needed goods and a significant drop in health care access in a global pandemic indicates that the U.S. health care system has serious vulnerabilities that need to be addressed.     

62,406 and Counting

What will we remember, as scholars, practitioners, policy-makers, educators, and citizens, about this acute phase of the catastrophe in the United States? The shocking federal failure concerning testing? That the first shortage was not of ventilators but protective gear? How infection rates and deaths in communities of color, immigrant neighborhoods, and nursing homes mercilessly exposed the relationship between social inequalities and health inequities? I hope we will remember that the field of bioethics did good work under pressure, learned that public health ethics and global health ethics are about securing the conditions for decent lives and decent work as well as saving lives, and committed ourselves to progress on the problem of inequality.     

Disability Rights as a Necessary Framework for Crisis Standards of Care and the Future of Health Care

In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment to both distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision-making related to their interests, including in crisis planning before, during, and after a pandemic like Covid-19.     

Vaccine Rationing and the Urgency of Social Justice in the Covid-19 Response

The Covid-19 pandemic needs to be considered from two perspectives simultaneously. First, there are questions about which policies are most effective and fair in the here and now, as the pandemic unfolds. These polices concern, for example, who should receive priority in being tested, how to implement contact tracing, or how to decide who should get ventilators or vaccines when not all can. Second, it is imperative to anticipate the medium- and longer-term consequences that these policies have. The case of vaccine rationing is particularly instructive. Ethical, epidemiological, and economic reasons demand that rationing approaches give priority to groups who have been structurally and historically disadvantaged, even if this means that overall life years gained may be lower.     

Learning from Covid

Mrs. Clark's case was an ordinary consult in an extraordinary time. She was refusing dialysis, but the psychiatric unit had concluded that she lacked capacity for such decision-making. The only difference between Mrs. Clark's current hospitalization and the last two was that it was April 2020 and a virus called Covid-19 had overtaken our hospital. As the chief of Montefiore Medical Center's bioethics service, when I received a consult before the virus, I always saw the patient. Whether the patient had been in a vegetative state for a day or for years, it didn't matter. I would lay my hand on a leg or an arm and observe. But Covid-19 enforced physical boundaries between my team and our patients; I would not be able to meet Mrs. Clark. Our hospital responded to the attack on human connection by getting creative. We asked ourselves, which tools are still available to us? Answering this involved, in part, finding new ways for our team of clinical ethicists to support the clinicians caring for Mrs. Clark.     

Interdependent Citizens: The Ethics of Care in Pandemic Recovery

The crisis of Covid-19 has forced us to notice two things: our human interdependence and American society's tolerance for what Nancy Krieger has called “inequalities embodied in health inequities,” reflected in data on Covid-19 mortality and geographies. Care is integral to our recovery from this catastrophe and to the development of sustainable public health policies and practices that promote societal resilience and reduce the vulnerabilities of our citizens. Drawing on the insights of Joan Tronto and Eva Feder Kittay, we argue that the ethics of care offers a critical alternative to utilitarian and deontological approaches and provides a street-ready framework for integration into public health deliberations to anchor public policy and investments concerning the recovery and future well-being of America's citizens and society.     

Between Crisis and Convention: How Should We Address Contingency?

The Covid-19 pandemic has brought about renewed conversation about equality and equity in the distribution of medical resources. Much of the recent conversation has focused on creating and implementing policies in times of crisis when resources are exhausted. Depending on how the pandemic develops, some communities may implement crisis measures, but many health care facilities are currently experiencing shortages of staff and materials even if the facilities have not implemented crisis standards. There is a need for shared conversation about equality and equity in these times of contingency between conventional and crisis medicine. To respond well to these challenges, I recommend that institutions rely on policy, professional education, and ethics consultation. As is the case with crisis policies, creating contingency policies requires that health care professionals decide on how, specifically, to achieve equity. A policy is only as effective as its implementation; therefore, institutions should invest in context-specific education on contingency policies. Finally, ethics consultation should be available for questions that contingency policies cannot address.