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.     

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.     

The Challenge of Defining Success in Bioethics’ Humanist Wing

In “Reason and the Republic of Opinion,” Leon Wieseltier bemoaned an age that reduces reason to utilitarian calculation and requires almost ritual genuflection before the altar of numbers. The spirit of this age is at work in the field of bioethics where, as Debra Mathews and colleagues point out in “A Conceptual Model for the Translation of Bioethics Research and Scholarship,” researchers and scholars are increasingly “being asked to demonstrate and also forecast the value and impact of their work.” Despite the reductionism that typically accompanies the movements imbued with this spirit, the concern for accountability that stands behind the call for measuring success is legitimate. The bioethics community is thus fortunate to have such a distinguished group of scholars wrestling with these matters. Indeed, the effort of Mathews et al. to articulate a framework for determining success in bioethics research and scholarship is especially admirable precisely because they resist the temptation to reduce success to quantitative measures alone. That said, it is also important to say that it is nearly impossible to engage with the task these scholars have set for themselves and not succumb to a kind of data fetishism. It is well and good to talk about the complexity of bioethics as a field, but the language of “metrics,” “outputs,” “feedback loops,” “stakeholders,” and the like is not the language of the disciplines of history, literature, philosophy, or religious studies—all fields that Mathews et al. rightly credit with making important contributions to bioethics research and scholarship.     

Do We Count?

In the article “A Conceptual Model for the Translation of Bioethics Research and Scholarship,” Debra Mathews and her colleagues want to apply to bioethics various translational concepts developed for biomedical research. According to experts in translational science, this would mean evaluating not only the extent to which research produces the “changes in thinking, practice, and policy” that interest Mathews et al. but also the appropriateness of bioethics training and the level of competency of people working in the field. Their proposal thus raises two sets of questions. The first, which the authors recognize must be the starting point for their argument, is, what precisely is the field in question? The second is whether the tools of translational science provide the right means of measuring the achievements of bioethics.     

A Last Gift

Here at the Center, we had the privilege of seeing how Dan Callahan lived out his last days and weeks. True to his nature, Dan never stopped thinking or writing. Indeed, his wife Sidney told me that he finished his last essay one day before his death, on July 16th, insisting that she help him get to the computer so he could discuss it with a colleague. “It's my last one,” he told her with his characteristic self‐awareness. Dan also chose the last topic he would focus on: climate change. At a December 2018 board meeting, Dan presented his desire to develop a workshop to explore the ways in which bioethics in general, and The Hastings Center in particular, might be able to make a valuable contribution to addressing the problem of global warming.     

Emergence of a Discipline? Growth in U.S. Postsecondary Bioethics Degrees

Teaching competency in bioethics has been a concern of the field since its start. In 1976, The Hastings Center published the first report on the teaching of contemporary bioethics. Graduate programs culminating in an MA or PhD were not needed at the time, concluded the report. “In the future, however,” the report speculated, “the development and/or changing social priorities may at some point allow, or even require, the creation of new academic structures for graduate education in bioethics.” Although that future might be upon us, the creation of a terminal degree in bioethics has its detractors. Scholars have debated whether bioethics is a discipline with its own methods and theoretical grounding, a multidisciplinary field bringing various professional perspectives to bear on particular types of problems, a set of problem‐solving skills to resolve moral disagreements, or something else entirely. Whether or not efforts to develop the methods and theory of bioethics have matured to the point that it is now a discipline in the strictest sense, new bioethics training programs have appeared at all postsecondary levels. In this essay, we examine the number and types of U.S. programs and degrees in this growing field.     

What Is Bioethics Worth?

What is bioethics to do when it strives to assess the quality of its research and scholarship and when it needs to justify its work to prospective funders, especially a funder like the National Institutes of Health that privileges empirical discovery? In “A Conceptual Model for the Translation of Bioethics Research and Scholarship,” Debra Mathews and colleagues take an important first step at advancing an answer. The authors describe what they call a translational process, whereby bioethics “outputs” are translated into changes of three types: in thinking, practice, and policy. It goes nearly without saying that bioethics research and scholarship must be held accountable for changes in thinking. What raison d'etre do we have if not to deepen thinking, question assumptions, and encourage ourselves and others to examine hard issues from novel approaches? Assuredly it is hard to assess quality, and even harder to assess specific changes in thinking for which high‐quality scholarship may be responsible, but it is a necessary goal and one for which we should strive without reservation. Bioethics should also affect policy and practice. We should document how it does and the extent to which it does as often and as prominently as possible. However, let us be wary of pinning too much on practice and policy changes as the primary way of establishing bioethics’ worth.     

Daniel Callahan (1930–2019)

Daniel Callahan, cofounder of The Hastings Center, prodigious author, and pioneer in bioethics, died on July 16, 2019, three days before his eighty‐ninth birthday. Callahan created The Hastings Center with Willard Gaylin in 1969. He served as its director from 1969 to 1983 and president from 1984 to 1996, and he continued as a scholar and president emeritus until his death, publishing books and essays and leading research projects. Tributes published in the days following Callahan's death celebrated him for his role in creating bioethics, for his challenging questions and unconventional thinking, and for his ability to do incisive scholarship in a way that had a public impact.     

Empty Spaces

“I'm Jewish, you know, and my mother said, ‘Always trust the rabbis.’” I never heard Mr. Weisman's refrain from his own lips. I never heard him say any words all. By the time I met him he was in a vegetative state, a man on the precipice of invisibility—white hair, thin pale limbs, melting into sheets of the same color. When I think about Mr. Weisman, I see empty spaces—the absence of his voice, the too‐large bed for his shrinking frame, the always‐empty chair by his bedside, and most of all, the myriad gaps in his life story. He was what in hospitals is often called a “patient alone”: someone who lacks decisional capacity and has no surrogate to make medical decisions for him. Mr. Weisman's aloneness prompted his primary team to consult our bioethics service in order to formulate goals of care for him, including the possibility of hospice care.     

Where Shall We Go?

This issue of the Hastings Center Report coincides with the annual conference of the American Society for Bioethics and Humanities, whose theme this year is “Where do we stand?” The issue addresses that theme with the article by Debra Mathews and colleagues and the set of brief response essays that follow it. Mathews et al., drawing on work carried out by the Association of Bioethics Program Directors, pose questions about how to understand and evaluate the worth of bioethics research. Those questions require them to think very broadly about what bioethics is, in the first place, and how it is related to medicine, health policy, science, and society generally. In short, they are thinking at the highest level about the question, where do we stand?     

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.”     

Reconceptualizing Autonomy: A Relational Turn in Bioethics

History's judgment on the success of bioethics will not depend solely on the conceptual creativity and innovation in the field at the level of ethical and political theory, but this intellectual work is not insignificant. One important new development is what I shall refer to as the relational turn in bioethics. This development represents a renewed emphasis on the ideographic approach, which interprets the meaning of right and wrong in human actions as they are inscribed in social and cultural practices and in structures of lived meaning and interdependence; in an ideographic approach, the task of bioethics is to bring practice into theory, not the other way around. The relational turn in bioethics may profoundly affect the critical questions that the field asks and the ethical guidance it offers society, politics, and policy. The relational turn provides a way of correcting the excessive atomism of many individualistic perspectives that have been, and continue to be, influential in bioethics. Nonetheless, I would argue that most of the work reflecting the relational turn remains distinctively liberal in its respect for the ethical significance of the human individual. It moves away from individualism, but not from the value of individuality.In this review essay, I shall focus on how the relational turn has manifested itself in work on core concepts in bioethics, especially liberty and autonomy. Following a general review, I conclude with a brief consideration of two important recent books in this area: Jennifer Nedelsky's Law's Relations and Rachel Haliburton's Autonomy and the Situated Self.     

Crossing Boundaries

I met Dan Callahan in 1986—when I came to pitch him. Coming from a sleek office setting near Boston, I was intrigued by The Hastings Center's higgledy‐piggledy environment where so many smart people got to work in a relaxed, inviting atmosphere. I had noticed that the Center was producing a great deal of policy work on a wide range of topics but didn't seem to go further than publishing the highly valuable guidance developed under Dan Callahan's leadership. I ended my pitch, “Look, Dan, where Hastings gets bored and wants to go on to the next topic, my group in Boston gets interested.” To my great pleasure, and despite his skepticism, Dan accepted the pitch. Beyond his generous responsiveness to unproven young people, Dan had many other virtues. For one, he was a boundary crosser.     

A Man of Vision: Daniel Callahan on the Nasty Problem and the Noxious Brew

This essay, published shortly before the 2020 U.S. presidential election (mired in controversy over a potential judicial appointment to the Supreme Court), celebrates Daniel Callahan's prescient book Abortion: Law, Choice and Morality. Nothing could be timelier. Callahan's central question was the “moral and social” struggle requisite for coherent policies and laws regulating abortion. He rejected “one-value” positions and strove to develop an expansive middle ground. He decried emotion untutored by reason, crude polemics, and bludgeoning: his recipe for a “noxious brew.” Callahan's way of thinking preceded the development of a critical health humanities, the advent of moral foundations theory in psychology, and the philosophical concept of a moral imagination. Each of these inheres in his rigorous approach to the abortion problem. His honesty and humility led to a sea change in his position on abortion. Fifty years later, much can still be learned from Callahan's arguments—about abortion and other bioethics issues—most importantly, in how we address wider social issues in these polarized times.     

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.     

On “Not Recommending” ECMO

The neonatologist was describing the dire situation, the complexity of the fetus's anomalies, and the options—comfort care, some resuscitation—and finished by saying, “We would not recommend ECMO …” “We would not recommend” is a curious phrase. There is something ambiguous, very nebulous about it, something passive, noncommittal, maybe even deflective. As a bioethics researcher, I wondered how this phrase is interpreted, how it influences parents' moral deliberation over their options.     

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.     

Storytelling

The November–December issue of the Hastings Center Report features a set of essays on the ethics of writing stories of patient care. The Report regularly features such stories, but some ways of telling them would be plainly unacceptable, and some in bioethics have suggested that the bar for acceptability is very high. Tod Chambers takes that position in this essay set. Drawing on the work of the literary theorist Mikhail Bakhtin, he proposes that case studies should be “polyphonic”—meaning that they contain “a diversity of voices that are unmediated and distinct.” In effect, he calls for a kind of coauthoring of stories about patients. In a second essay, Arthur Frank also calls for including the patient’s voice, but he builds on Bakhtin’s call for “dialogic” storytelling, in which the author seeks to represent the characters in the story as having their own voices and their own lives: “they can talk back.” A third essay, by Philip Rosoff, is concerned about the problem of harm and patient anonymity, which in the contemporary media environment has become harder to address.