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.     

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.     

Callahanian Bioethics

For someone with an outsized influence on a field he helped to create, Dan Callahan was anything but overbearing. Physically compact, thin, and wiry in older age, he spoke at the rapid speed of his mind. Soon after I met him—when I was on the cusp of what would become a year‐long residency at The Hastings Center—I found myself seated in his decidedly quaint living room. Dan told a story that evening, one of many that has stuck in my head. It seemed to encapsulate his moral mindset and, in a way, his broader vision for bioethics. I am sure he has told the story many times to many people, but here it is as I recall it.     

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.     

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.     

Dan Callahan's Press Clips

For more than eleven years, I worked with Dan Callahan as an editor, a liaison with journalists, and a sounding board for ideas. To Dan, every new writing project was a thrill, whether it was for the New Republic or a blog. He consumed a wide range of professional and scholarly literature, followed the news with the eye of a reporter, and called experts when he wanted to learn more about something he had read. The result was a volcanic bubbling of story ideas. If he didn't turn them into articles or books, I sometimes had the feeling that he might burst.     

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.     

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.     

Seeking the unseen

When Dan Callahan and Will Gaylin began The Hastings Center, they saw and sought to study the unseen. They were among the very first to recognize that remarkable advances in biomedical technology were generating questions our society had never before faced. As I take the helm of The Hastings Center forty‐plus years later, it's now my job to be sure we see, name, grapple with, and act on today's questions. Over the next two years, the Center will engage its scholars, our Fellows, other bioethicists, scientists, social science and humanities scholars, health care policy‐makers, and key stakeholders such as journalists, educators, and patients in defining today's set of critical questions.     

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.     

The Scholar at Work

My thirteen years as president of Hastings have been rich in solidarity. Now for some solitude, and a new adventure: Cynthia and I will relocate to Cape Cod, a place rich in family memories. I'll explore the roads and trails on my bicycle and, if I can become a competent kayaker, the waterways. Some of my best thinking has come while riding. I'll have a study there, a place to think and write. I will continue to support the initiatives we've begun at the Center, especially bioethics in the public interest and the flourishing of bioethics internationally. The challenge is to balance solitude and solidarity. Next year I'll be the Terry Visiting Scholar at Yale, a wonderful chance to discuss ideas with students and faculty there. I'm considering other opportunities to share what I've learned and to learn from others. To everyone, thanks for your patience, wisdom, and support. May your next adventure be surprising and fulfilling.     

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.     

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.     

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.     

Bioethics in the law

The role of law in bioethics is clear. Laws are enforcement tools: they govern which conditions qualify an individual for disability benefits, or what oversight is necessary for clinical trial protocols, or how patent applications for medical devices should be regulated. I initially studied the law in order to enhance my work in bioethics, but in examining how the law works, I have become convinced that the converse opportunity also exists: there are many areas of law that would benefit from greater input from those in the bioethics community.     

A Modern,Rational Jeremiad

I have been a Daniel Callahan reader for over thirty years. My first published review was of Abortion: Law, Choice, and Morality (1970). Callahan's latest book, The Five Horsemen of the Modern World: Climate, Food, Water, Disease, and Obesity, is a sustained and detailed explanation of a series of challenges facing humankind in this century. Callahan's prognosis is bleak, his analyses credible, and while hope is not lost, the moral of the story is that we had better get our act together fast. Callahan argues that when we face challenges like these, rational persuasion is insufficient. Human emotions must be engaged. Without knowledgeable emotional engagement by millions of people, we are done for. It seems to me that he is really calling for a national cultural conversion experience, rather as, almost three hundred years ago, Jonathan Edwards declared that if there is a hell, it makes good sense to frighten people out of it!     

From the Foundation Up

In 2019, The Hastings Center will celebrate its fiftieth anniversary. It is more than a bit staggering to think how far we have come since 1969. When I floated the idea of a center on bioethics to my friend and neighbor, psychiatrist Willard Gaylin, at a Christmas party in 1968—even before the word “bioethics” was used—I had only the fuzziest idea of where that would take us. Neither Will nor I had run anything, nor did we know how to raise money to support an organization. We would and did learn how, but much of what we did in those early years was made up on the fly. We not only had to invent an organization but no less to invent a field of research and education on issues still little noticed by the public or academics. Out of curiosity, I recently googled “bioethics.” I was astonished at what I found and by the sheer quantity of what is going on.     

The Clue

As I stood outside of Carlos's room, I felt caught on the horns of a dilemma. It seemed impossible to truly “be there” for Carlos without sacrificing my other intern duties. This tension pervaded much of my residency training, as I often found myself spending more time completing chart notes, answering pages, and giving sign out than I did at the bedside with my patients. I knew I had a duty to “do my job”—I could not let my team down. But what about my duty to Carlos, a duty to act on my intuition and try to “get to the bottom” of his illness, if that was even possible? And what about my thirteen other patients? Wasn't I was their doctor as well? I have spent countless hours studying the ethical frameworks for medical rationing. And yet no framework could have told me how to weigh my intuition in that crucial moment of decision‐making, or when it was okay to leave a few notes unfinished in order to have the time to talk with Carlos. Suddenly, I knew what I had to do.