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.     

Thinking Together

Over email a few days after the death of Daniel Callahan, cofounder of The Hastings Center and for many years its director and then president, Joseph Fins, a longtime Hastings colleague, offered this comfort: “[H]enceforth every issue of the Report is a living memorial to Dan the writer, editor, and institution builder.” In the Hastings Center Report's first issue, published in June 1971, Dan stated, “To say that [the work of the Report] must be multi‐disciplinary is only to say the issues [it will address] are as complex as human beings themselves.” This July–August 2019 issue continues the tradition Dan began. An essay by Laura Guidry‐Grimes expands on the importance of interdisciplinary conversations and problem solving—and attends to the complexity of human beings—in recalling a patient who was failed by multiple social institutions. In the lead article, a team of authors led by James Sabin identifies a challenge to conducting ethical research within learning health organizations, where research and care are integrated with the aid of patient data from health insurance providers.     

Learning from a Pandemic

The Covid-19 pandemic has highlighted connections between health and social structural phenomena that have long been recognized in bioethics but have never really been front and center—not just access to health care, but fundamental conditions of living that affect public health, from income inequality to political and environmental conditions. In March, as the pandemic spread globally, the field's traditional focus on health care and health policy, medical research, and biotechnology no longer seemed enough. The adequacy of bioethics seemed even less certain after the killing of George Floyd, whose homicide showed in an especially agonizing way how social institutions are in effect (and often intentionally) designed to make the lives of black people go poorly and end early. Whether bioethics needs to be expanded, redirected, and even reconceived is at the heart of the May-June 2020 issue of the Hastings Center Report, which is devoted to questions provoked by and lessons emerging during this pandemic.     

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.     

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?     

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.     

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.     

A Demanding Ethics of Care

The writer responds to the book review essay “Caring for People with Disabilities: An Ethics of Respect,” by Kevin Mintz and David Wasserman, in the January-February 2020 issue of the Hastings Center Report, which discusses her book Learning from My Daughter: The Value and Care of Disabled Minds.     

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.     

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.     

Saving Science by Doing Less of It?

In the current issue of The New Atlantis, Daniel Sarewitz, professor of science and society at Arizona State University, argues that science is broken because it is managed and judged by scientists themselves, operating under Vannevar Bush's famous 1945 declaration that scientific progress depends on the “free play of free intellects … dictated by their curiosity.” With that scientific agenda, society ends up with a lot of unnecessary, uncoordinated, and unproductive research. To save science, holds Sarewitz, we need to put it in the hands of people who are looking for practical solutions to specific problems. In one article in this issue of the Hastings Center Report (November‐December 2016), Kirstin Borgerson poses a question in this same conceptual space: are there too many clinical trials? Other pieces in the issue cover a mix of topics: the lead article addresses some of the challenges that will have to be faced as “artificial organs” become available, a third article looks at how crowdfunding sites like GoFundMe can be used to make public appeals for medical funding, and a special report found in a supplement to the issue offers a round of analysis and recommendations about the provision of medical care to professional football players.     

The Intimate Responsibility of Surrogate Decision‐Making

Daniel Brudney's clear‐headed analysis, in this issue of the Hastings Center Report, of the difference between a patient's and a surrogate's right to make medical treatment decisions contributes to a longstanding conversation in bioethics. Brudney offers an epistemological and a moral argument for the patient's and the surrogate's right to decide. The epistemological argument is the same for both parties: the (competent) patient has a right to decide because she is presumed to know her own interests better than anyone else, and the surrogate is entitled to make decisions because she knows the patient better than anyone else. However, argues Brudney, the moral arguments are not parallel. The patient's moral right to decide for herself is an exercise of autonomy, but the only ground for the responsibility held by the surrogate, says Brudney, is that she knows the patient better than the health care professionals do. If in fact that's not the case, then she forfeits her right to be the patient's surrogate. For all the clarity and force of his argument, I think Brudney may be barking up the wrong tree. In cases of proxy decision‐making, it's intimacy, not knowledge, that does the heavy moral lifting.     

Patient Welfare and Trust

This January-February 2020 issue marks the start of the Hastings Center Report's fiftieth volume. The issue introduces the column Looking Back, Looking Forward, which we plan to run in this volume only. Conceived by Hastings Center fellows Douglas Diekema and Lainie Friedman Ross, the column will explore the significance of landmark publications from the first fifty years of bioethics. For the first installment, Diekema looks at the unconventional moral position Hans Jonas took in his 1969 essay “Philosophical Reflections on Experimenting with Human Subjects.” In the lead article, “Trust, Risk, and Race in American Medicine,” Laura Specker Sullivan contextualizes patient mistrust within a history of racism in general and in the nation's biomedical research and clinical institutions specifically. Specker Sullivan proposes ways for individual clinicians to improve relationships with distrustful patients and their families. Two commentaries provide additional insights and recommendations about the work of earning patient trust.     

Words Matter

The lead article in this, the September-October 2020, issue of the Hastings Center Report considers the use of metaphors in communications with clinicians and patients.     

Physician Burnout and the Americans with Disabilities Act

The writer responds to the commentary “Physician Burnout Calls for Legal Intervention,” by Sharona Hoffman, in the November-December 2019 issue of the Hastings Center Report.     

Recognizing Moral Injury: Toward Legal Intervention for Physician Burnout

The writers respond to the commentary “Physician Burnout Calls for Legal Intervention,” by Sharona Hoffman, in the November-December 2019 issue of the Hastings Center Report.     

Patient Care to Public Health to Synthetic Biology

The January‐February 2018 issue of the Hastings Center Report includes pieces addressing patient care concerns that lie at the original core of bioethics and pieces that reflect the field's growing breadth. Among the pieces getting at the original core is an article by philosopher Daniel Brudney on the moral values underpinning surrogate decision‐making. The article and the two commentaries that follow it contribute to the debate on the moral authority of surrogate decision‐makers. Several items in the issue take up matters of public health and health policy. For example, the lead article, by Nir Eyal, examines the ethics of using inconvenience—waiting lists and the like—to constrain the consumption of health care services, and a commentary by Lawrence Gostin examines the regulation of sugary beverages. A supplement to the issue contains a special report about the tools and processes used to assess the impact of emerging technologies, with a focus on synthetic biology.     

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.     

Chimeras and the Problem of Other Minds

The writer responds to the article “Human-Animal Chimeras: The Moral Insignificance of Uniquely Human Capacities,” by Julian J. Koplin, in the September-October 2019 issue of the Hastings Center Report.