The psychology of autonomy

In May 2016, right around the time that this issue of the Hastings Center Report should be published, The Hastings Center is holding a conference in New York City titled “Bioethics Meets Moral Psychology.” The goal of the conference is to consider the lessons that bioethicists should learn from the raft of literature now accumulating on how the mental processes of perception, emotion, and thinking affect things that bioethicists care about, from the education of health care professionals to the conflicts that arise in clinical care, the “culture wars” over bioethical policy issues, the status of different cultures’ value systems, and the very understanding of the values that are foundational in moral thinking. The articles in this issue simply provide more evidence that bioethics is meeting moral psychology.     

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?     

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 .     

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.     

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.     

Skepticism in the Genomic Era

I joined The Hastings Center this past summer, after graduating from Duke University, where I researched advancements in neuroscience and genomics and their import for law, ethics, and policy. This research required, to an extent, faith in the idea that researchers can identify pathways by which genes combine with epigenetic and environmental factors to affect neuronal activity and influence behaviors. Throughout my first months here, I have puzzled over broad critiques of “genomic hype” in recent literature, which clash with the optimistic rhetoric found in the Human Genome Project and the Precision Medicine Initiative.     

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.     

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.     

Rationing Care through Collaboration and Shared Values

Although “rationing” continues to be a dirty word for the public in health policy discourse, Nir Eyal and colleagues handle the concept exactly right in their article in this issue of the Hastings Center Report. They correctly characterize rationing as an ethical requirement, not a moral abomination. They identify the key health policy question as how rationing can best be done, not whether it should be done at all. They make a cogent defense of what they call “rationing through inconvenience” as a justifiable allocational technique. And they wisely call for research on the effectiveness and fairness of this approach and other methods of rationing. I fully agree with their approach to rationing and with their argument that the process they provocatively label “rationing through inconvenience” should not be rejected out of hand. But I believe they have underestimated two ways in which the practical impacts of rationing through inconvenience limit its potential usefulness: the asymmetry of its effect on patients and physicians and the way in which it reduces the capacity of health systems to learn from experience.     

Facts,values, and journalism

At a time of fake news, hacks, leaks, and unverified reports, many people are unsure whom to believe. How can we communicate in ways that make individuals question their assumptions and learn? My colleagues at The Hastings Center and many journalists and scientists are grappling with this question and have, independently, reached the same first step: recognize that facts can't be fully understood without probing their connection to values. “Explaining the basics is important, of course, but we also need to diversify our approach to the coverage of science—particularly as it intersects with the matrix of cultural, religious, social, and political values of our readers,” said an article in Undark, an online magazine of science journalism. An editorial in Nature called for scientists to engage directly with citizens in debates over climate change and genome editing, noting that “the ethical issues can be critically dependent on the science, for example, in understanding where the boundaries between non‐heritable and heritable genome modifications might be.” We're here to help .     

An Ethical Obligation for Bioethicists to Utilize Social Media

In this issue of the Hastings Center Report, Mélanie Terrasse, Moti Gorin, and Dominic Sisti respond to recent efforts to address the “digital attention crisis,” arguing that “[b]ioethicists should make their voices heard in the debate on the responsibilities of social media companies toward their consumers and society at large.” I strongly agree. I have frequently been asked by my colleagues why I spend time on social media professionally, on top of all the competing demands associated with my work as a bioethicist and medical educator. There is sometimes a dismissive tone in these questions, a sense that attention to social media is beneath a bioethicist’s proper intellectual pursuits. Such perspectives overlook the extraordinary opportunities of social media and the important role for bioethics, as a field, in examining them.     

Heart and Soul

The lead article in this January‐February 2021 issue—the first of the Hastings Center Report's fiftieth year of publication—does not set out to change medicine. It tries instead to understand it. In “A Heart without Life: Artificial Organs and the Lived Body,” Mary Jean Walker draws on work in phenomenology and on empirical research with people who have received artificial heart devices to argue that such devices may have two very different effects on how a patient experiences the body and the self. Several other pieces in this issue address the ongoing slew of patient care and health policy problems surrounding the Covid‐19 pandemic, and a special report titled Democracy in Crisis: Civic Learning and the Reconstruction of Common Purpose considers the requirements for public involvement in policy‐making about bioethical issues.     

It's All Relative

In this issue of the Hastings Center Report, Daniel Brudney suggests that clinicians have an overly deferential attitude toward their patients’ surrogate decision‐makers that is rooted in a wrongful investment of moral authority. He maintains that surrogate decision‐makers have no moral right to decide for their loved ones and that their value in the decision‐making process is limited to their knowledge of their loved one's preferences. If operationalized, Brudney's framework would ease the way for clinicians to remove a surrogate who cannot provide information relevant to the patient's preferences and to resort to a paternalistic model of decision‐making. Brudney fails to consider that the value of the surrogate does not flow from the surrogate, but rather from the patient's moral claim to have decisions made for him or her by a loved one. This claim recognizes that surrogates have intrinsic value through their relationship to and knowledge of the patient. Bioethics consultation services can assist clinical teams in engaging with the human crowd that surrounds each patient and navigating conflicting values and goals. This relational approach embraces the “mire and blood” that is endemic to relationships and clinical encounters.     

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.     

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.     

The Golden Rule

The Hastings Center's chief advancement officer describes values and intellectual interests that undergird his work. “My job is itself collaborative in spirit,” Sauder writes. “My primary responsibility is to identify and build connections with a wide variety of people who value ethical decision-making at the crossroads of health, science, and technology.”     

Henri Wijsbek and Thomas Nys Respond

The authors respond to a letter by Tim Holland in the January-February 2023 issue of the Hastings Center Report concerning their article “On the Authority of Advance Euthanasia Directives for People with Severe Dementia: Reflections on a Dutch Case.”.     

Toward Public Bioethics?

This issue of the Hastings Center Report (May‐June 2017) features a couple of interesting takes on the governance challenges of emerging technologies. In an essay on the National Academies of Science, Engineering, and Medicine report published this February on human germ‐line gene editing, Eric Juengst, a philosopher at the University of North Carolina, argues that the NASEM committee did not manage to rethink the rules. Juengst reaches what he calls an “eccentric conclusion”: “The committee's 2017 consensus report has been widely interpreted as ‘opening the door’ to inheritable human genetic modification and holding a line against enhancement interventions. But on a close reading it does neither.” In the column Policy and Politics, Sarah Chan, a chancellor's fellow at the University of Edinburgh, discusses the emerging science of “organoids,” “embryoids,” and “synthetic human entities with embryo‐like features” and calls for a sustained effort to rethink the rules for embryo research.