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.     

Pediatric Drug Labeling and Imperfect Information

I first became aware of bioethics in the spring of 1980. I had spent a thirty-six-hour shift shadowing a medical resident, and I was struck that many of the resident's decisions had ethical dimensions. The next day, I came across the Hastings Center Report, and I realized I wanted to explore ethical issues I found implicit in clinical care, even though I still wanted to become a pediatrician. In September 2019, when I attended my first meeting of the U.S. Food and Drug Administration's Pediatric Advisory Committee, as a pediatric pulmonologist, I had the same sense of awe and curiosity that I had forty years ago. What had appeared initially as somewhat technical decisions about the regulation of drug labeling was suffused with ethical questions. The committee was asked to discuss possible changes to the labeling of two previously approved drugs.     

A Champion for the Unestablished

As a student in bioethics, I knew that The Hastings Center and its founders were the height of excellence in this field, and therefore I found them both intimidating and intriguing. When I began working there, Dan Callahan was supportive of my endeavors to provide a venue for students and other young writers to express their views on bioethics. I started my own blog called Bioethx under 25 that featured short essays by anyone who wished to submit, generally individuals who had a genuine philosophical interest but were not yet at the level of pursuing a Ph.D. Dan's support of my project culminated in his sponsorship of the Daniel Callahan Young Writer's Prize, an essay contest run through the blog. This was one of the many ways he demonstrated that making theoretical contributions to bioethics should not be limited to a select few.     

Pedagogical Support for Responsible Conduct of Research Training

The number of training programs for the responsible conduct of research (RCR) has increased substantially over the past few decades as the importance of research ethics has received greater attention. It is unclear, however, whether the proliferation of RCR training programs has improved researcher integrity or the public's trust in science. Rather than training researchers simply to comply with regulations, we could use the opportunity to develop researchers' ability to understand and appreciate the ethical ideals that inform the regulations in order to help them integrate ethical decision‐making into their work on a regular basis. Incorporating ethical principles into research training requires a new way of teaching RCR and the development of support materials to facilitate its adoption. The Presidential Commission for the Study of Bioethical Issues, a panel established to advise the President on bioethical issues arising from advances in biomedicine and related areas of science and technology, developed and provides pedagogical materials based on its published reports to facilitate the integration of ethics education across the curriculum and in support of RCR and general bioethics education.     

Green Bioethics and Hope

Many environmental problems are now more serious and urgent than ever. In high-income countries, health care is part of the problem. In Principles of Green Bioethics: Sustainability in Health Care, Cristina Richie focuses on medical developments, techniques, and procedures, and she proposes four principles for green bioethics: distributive justice, resource conservation, simplicity, and ethical economics. Richie is right to emphasize the need for green bioethics, and I admire her aim to bring environmental concerns back into bioethics, but I was disappointed with this book. Since Plato, much of ethics has focused on the characteristics or principles of the ideally just society. This work in ethics seeks to transcend the culture in which we live in order to provide guidance about what we should do. I think it would be better to start with the messy, problematic, and unjust situations in which we are enmeshed.     

Telos versus Praxis in Bioethics

The authors of “A Conceptual Model for the Translation of Bioethics Research and Scholarship” argue that bioethics must respond to institutional pressures by demonstrating that it is having an impact in the world. Any impact, the authors observe, must be “informed” by the goals of the discipline of bioethics. The concept of bioethics as a discipline is central to their argument. They begin by citing an essay that Daniel Callahan wrote in the first issue of Hastings Center Studies. Callahan argued in this 1973 piece that bioethics had yet to attain the status of a discipline, and he lauded the freedom of being able to define a new discipline. Callahan's essay shares with Mathews and colleague's a peculiarity: neither ever defines what it means to refer to something as a “discipline.” To define a discipline does mean attending to the intended end product of scholarly activity, so I concur with Mathews et al.’s focus on outcomes. But I am concerned that in their argument they confusingly entangle their understanding of an academic discipline's internal goals, its telos, with its potential to have an impact on the external world, its praxis. The confusion that this can bring exposes what I believe is a profound problem within bioethics, the discipline's peculiar and at times intellectually hazardous relationship with its institutional hosts.     

Methodology and Myopia? Some Praise,a Problem,and a Plea

In “A Conceptual Model for the Translation of Bioethics Research and Scholarship,” Debra Mathews et al. aim to “begin an important discussion” about how to measure success in bioethics, and in doing so they set out a typology of bioethics research and scholarship with the arguably correct assumption that we cannot evaluate success in bioethics without first understanding what its goals are. I think the authors are correct in their claim that, in the current academic climate, having work in bioethics deemed a success is likely to hinge, in some way, on its being translated into practice and having impact. I want, however, to add a critical voice in the form of three considerations that I feel ought to be attended to before the work progresses further, the first being that the typology Mathews et al. propose is highly problematic. Although there is a burgeoning literature on “empirical bioethics” methodologies that blend empirical and conceptual work, the typology appears to ignore this.     

Raising the Bar: The Implications of the IOM Report on the Use of Chimpanzees in Research

I had the privilege of chairing the Institute of Medicine Committee on the Necessity of Chimpanzees in Biomedical and Behavioral Research in 2011, an effort that has lessons not only about the questions presented to it, but also about the policy and practice of the use of chimpanzees in research and about animal research policy in general. In this essay I will assess the impact and implications of the committee's work and at the same time clarify what I see as its limits. All in all, I believe it is fair to say that the committee's recommendations and the process of its work represent a success for bioethics‐related consensus committees. The combination of topic, timing, and public stakeholder sentiment may have aligned in unique ways that contributed to that success. But even if it turns out to be a special case of sorts, there are lessons to be learned for the future.     

Whatever Happened to Human Experimentation?

Several years ago, the University of Minnesota hosted a lecture by Alan Milstein, a Philadelphia attorney specializing in clinical trial litigation. Milstein, who does not mince words, insisted on calling research studies “experiments.” “Don't call it a study,” Milstein said. “Don't call it a clinical trial. Call it what it is. It's an experiment.” Milstein's comments made me wonder: when was the last time I heard an ongoing research study described as a “human experiment”? The phrase is now almost always associated with abuses. Asking a prospective subject to sign up for a medical experiment would probably get roughly the same response as asking him or her to sign up for a police interrogation. It wasn't always this way. In the early days of American bioethics, scholars used the word “experimentation” in the same neutral way that they later began to use “research study” and “clinical trial.”     

Why Bioethics Has a Race Problem

In the September‐October 2001 issue of the Hastings Center Report, editor Gregory Kaebnick encouraged bioethicists to turn their attention toward “easily overlooked, relatively little‐talked‐about societal topics” such as race. In 2000 the president of the American Society for Bioethics had called for a more socially conscious bioethics. Race was risky territory, Kaebnick pointed out, but this challenge did not justify avoidance. Over the next fifteen years, the response to this editor's invitation to examine the racial dimensions of medicine in the Report was limited both in quantity and in terms of the range of topics covered. All told, the bioethics community has not responded to the editor's call for bioethicists to engage with the racial dimension of medicine, and the Report has not really come through on the tacit commitment made in 2001. The lack of interest in race matters evidenced in the Report as well as the American Journal of Bioethics has also prevailed in medical humanities journals, whose few pieces on race have tended to remove race relations from our current realities in two ways: some articles locate medical racism in the American past or in colonial Africa, while others analyze the medical disorders of fictional characters. Bioethicists have not embraced the opportunity to create a sociologically and historically informed bioethics that might be applied to the lives of black Americans and their unending health crisis.     

Social Media,E‐Health,and Medical Ethics

Given the profound influence of social media and emerging evidence of its effects on human behavior and health, bioethicists have an important role to play in the development of professional standards of conduct for health professionals using social media and in the design of online systems themselves. In short, social media is a bioethics issue that has serious implications for medical practice, research, and public health. Here, we inventory several ethical issues across four areas at the intersection of social media and health: the impact of social networking sites on the doctor‐patient relationship, the development of e‐health platforms to deliver care, the use of online data and algorithms to inform health research, and the broader public health consequences of widespread social media use. In doing so, we review discussions of these topics and emphasize the need for bioethics to focus more deeply on the ways online technology platforms are designed and implemented. We argue that bioethicists should turn their attention to the ways in which consumer engagement, bias, and profit maximization shape online content and, consequently, human behavior and health. We also offer a set of recommendations and suggest future directions for addressing ethical challenges in these domains.     

The Relational Potential Standard: Rethinking the Ethical Justification for Life‐Sustaining Treatment for Children with Profound Cognitive Disabilities

In this era of rapidly advancing biomedical technologies, it is not unusual for parents of children with profound cognitive disabilities to ask clinicians to provide invasive life‐sustaining treatments. Parental requests for such interventions pose a moral dilemma to the treating medical team, as there may be a discrepancy between the team's perception of the child's best interest and the apparent rationale underlying a parent's request. This gap highlights the limitation of the best interest standard in cases where, due to a neurodevelopmental disorder or brain injury, the child's capabilities are severely limited and their interests may be difficult to discern. The harm principle is also inadequate for decision‐making in response to these parental requests. To address these limitations, and inspired in part by John Arras's work on the relational potential standard, we propose an integration of care ethics within pediatric decision‐making using a new version of this standard. The potential for children to be in caring and loving relationships with their parents, what we will call “relational potential,” may provide an ethical justification for clinicians to support parental requests for life‐sustaining treatments.     

Global bioethics

This August, I participated in the conference “Genome Editing: Biomedical and Ethical Perspectives,” hosted by the Center for the Study of Bioethics at the University of Belgrade and cosponsored by the Division of Medical Ethics of NYU Langone Health and The Hastings Center. The prime minister of Serbia, Ana Brnabi?, spoke of the significance of bringing together an international community of bioethicists, acknowledging that ethical, social, and legal issues surrounding gene editing technologies transcend national boundaries. Europe's Oviedo Convention prohibits human germline gene editing, and UNESCO's Universal Declaration on the Human Genome and Human Rights says that germline editing “could be contrary to human dignity,” an assault on humanity itself. Whether one agrees or not, engaging with the idea forces us to think about what it means to be part of the global human community and about the moral significance of the human genome to creating that community. The conference highlighted for me how challenging having international, much less global, conversations about bioethics can be .     

Truth Telling,Companionship, and Witness: An Agenda for Narrative Ethics

Narrative ethics holds that if you ask someone what goodness is, as a basis of action, most people will first appeal to various abstractions, each of which can be defined only by other abstractions that in turn require further definition. If you persist in asking what each of these abstractions actually means, eventually that person will have to tell you a story and expect you to recognize goodness in the story. Goodness and badness need stories to make them thinkable and to translate them into individual and collective actions. Yet after more than two decades of considering the issue, I do not believe that a collection of stories can by itself guide actions in ways that are sufficient to respond to ethical troubles in institutional settings. The question will always remain open for me, but my present belief is that narrative bioethics is always hyphenated, in the sense that guidance from stories needs to be allied with other ethical guidance. Each side of the hyphen qualifies the other side. The hyphenation I will argue for in this essay is “narrative‐deontology.”     

Toward the Polyphonic Case

Can one publish a bioethics case ethically? I suspect that most in bioethics would feel comfortable publishing a case if the subject—the patient—gave explicit permission, the amount of biographical information revealed was under the control of the subject, and the subject fully understood the benefits and risks of publishing the case. Some might add that the subject should have a chance to approve the final representation. I think that the ethics of publishing cases needs to be rethought. And this rethinking needs to be focused not on the way publishing a case might harm a patient (that is, nonmaleficence) but, rather, on how a case presentation does not convey the patient’s own voice in the narrative (that is, respect for autonomy). Bioethics needs a new model of case presentation: the polyphonic case, which demands that the subject be a part of the case’s construction.     

Chinese Bioethicists Speak Out on Covid-19, and Others Follow

Shortly after Wuhan, the city where the novel coronavirus was first identified, was placed on lockdown in January, I received an email from two Hastings Center fellows in China: Renzong Qiu, of Renmin University of China in Beijing, and Ruipeng Lei, of Huazhong University of Science and Technology in Wuhan. Attached was a post for our blog, Hastings Bioethics Forum, that raised ethical and legal questions about China's response. “Hegel says, ‘We learn from history that we do not learn from history,’” their piece began. “The recurrence of the coronavirus epidemic in China proves his insight to be right.” This bold report from bioethicists in China was courageous and eye-opening. It was among the first discussions in bioethics of what has since become a global crisis, and it turned out to be the first in a string of commentaries in Hastings Bioethics Forum with insights about the crisis, the issues it raises, and how the world should respond to it.     

The woman question in medicine: an update

The Women's Movement has greatly benefitted women in the workplace. What about in their encounters with medicine? This paper reviews the history of physicians’ attitudes toward women and then considers three contemporary areas of medicine in particular: health research relevant to women, health policies, and women's success at working their way into the medical profession. The picture that emerges is somewhat less than rosy. The androcentrism that has been so glaring in the history of medicine has not entirely gone away. Women and their concerns are still considered less important than men's, and women are valued more for what they provide than for who they are themselves. These problems are mostly not the fault of specific physicians or other individuals; they are, rather, systemic problems—the result of social practices and institutions that work together quite impersonally to favor the interests of men over women. Correcting them requires listening to women's voices better than medicine, or bioethics, has so far managed to do.     

Practice verus theory

In this review essay, Jonsen is concerned with the relationship between theory and practice in bioethics, a concern he finds reflected in three recent books: the third edition of Principles of Biomedical Ethics, by T. Beauchamp and J. Childress (Oxford University Press; 1989); Moral Theory and Moral Judgments in Medical Ethics, edited by B. Brody (Kluwer Academic; 1988); and Theory and Practice in Medical Ethics, by G.C. Graber and D.C. Thomasma (Continuum; 1989). Jonsen questions the contemporary presumption that "theory is an inseparable companion to practice," arguing that the role, function, and meaning of ethical theory are not clear. He predicts increasing debate between "philosophers" who seek to formulate theory that might be applied to practice, and "casuists" who find theory an obstacle to practical resolution of medical dilemmas.