Franklin Miller

Given the long‐standing controversy about whether the brain‐dead should be considered alive in an irreversible coma or dead despite displaying apparent signs of life, the ethical and policy issues posed when family members insist on continued treatment are not as simple as commentators have claimed. In this article, we consider the kind of policy that should be adopted to manage a family's insistence that their brain‐dead loved one continues to receive supportive care. We argue that while it would be ethically inappropriate to continue to devote scarce acute care resources to such patients in a hospital setting, it may not be ethically inappropriate for patients to receive these resources in certain other settings. Thus, if a family insists on continuing to care for their brain‐dead loved at their home, we should not, from a policy perspective, interfere with the family's wishes. We also argue that healthcare professionals should make some effort to facilitate the transfer of brain‐dead patients to these other settings when families insist on continued treatment despite being informed about the lack of any potential for recovery of consciousness. Our arguments are strengthened by the fact that patients in a persistent vegetative state, who, when correctly diagnosed, also have no potential for recovery of consciousness, are routinely transferred from hospitals to nursing homes or long‐term care facilities where they continue to be ventilated, tube fed and to receive other supportive care. We also briefly explore the question of who should be responsible for the costs of such treatment at the long‐term care facility.

There is limited guidance on how to assess the ethical acceptability of research risks that extend beyond research participants to third parties (or “research bystanders”). Community or stakeholder engagement has been proposed as one way to address potential harms to community members, including bystanders. Despite widespread agreement on the importance of community engagement in biomedical research, this umbrella term includes many different goals and approaches, agreement on which is ethically required or recommended for a particular context. We analyse the case of a potential Zika virus human challenge trial to assess whether and how community engagement can help promote the ethical acceptability of research posing risks to bystanders. We conclude that, in addition to having intrinsic value, community engagement can improve the identification of bystander risks, effective approaches to minimizing them, and transparency about bystander risks for host communities.

In this essay I offer practical guidance aimed at promoting competence and success in the activity of bioethics scholarship. I present a set of maxims or rules of thumb, which I exemplify and explicate by drawing on my own work, encompassing 30 years of practicing bioethics scholarship, formal and informal mentoring, extensive peer reviewing for bioethics, biomedical, and philosophy journals, and several years as Deputy Editor of Perspectives in Biology and Medicine—an interdisciplinary journal that frequently publishes bioethics articles. The title of the essay is adapted from Max Weber’s famous lecture, “Science as a Vocation”.Bioethics scholarship generally takes two forms:...

We are very grateful to the commentators for taking the time to respond to our little article, ‘What Makes Killing Wrong?’ They raise many points, so we cannot respond to them all, but we do want to head off a few misinterpretations.Our critics in this journal avoid one careless misinterpretation, but less informed readers have pressed this misinterpretation in popular venues, so we need to start by renouncing it. We do not deny that killing humans is morally wrong. To the contrary, we argue that killing humans is almost always morally wrong, because killing humans is almost always disabling, and disabling is morally wrong. Here we do not disagree with common sense. We also do not deny that killing partially or even profoundly disabled humans is morally wrong. People who are disabled in some ways still retain many other valuable abilities. This should be obvious. To kill a person with some disabilities but many other valuable abilities is to disable that person, so that is morally wrong. Here again we do not disagree with common sense. The one and only surprising application of our theory is to humans who are alive but totally disabled. We argue that, apart from special circumstances, it is not morally wrong to kill live humans who are totally disabled, whereas many people think that it would be morally wrong to kill even in these extreme and unusual cases, because they assume that killing is morally wrong for reasons apart from disabling.What could those reasons be? DeGrazia mentions three possibilities. First, ‘the harm of killing —in those ordinary cases in …

The charge of complicity has been raised in debates over the ethics of fetal tissue transplantation and embryonic stem cell research. However, the applicability of the concept of complicity to these types of research is neither clear nor uncontroversial. This article discusses the historical case of Julius Hallervorden, a distinguished German neuropathologist who conducted research on brains of mentally handicapped patients killed in the context of the Nazi ‘euthanasia’ programme. It is argued that this case constitutes a paradigm of complicity in research that is useful in assessing complicity in contemporary research ethics

The Belmont Report, issued in 1979 by the US National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, is a landmark document providing guidance on the ethics of research involving human subjects. It is divided into three sections: “Boundaries between practice and research; “Basic ethical principles” ; and “Applications of these principles with respect to informed consent, assessment of risks and benefits, and selection of subjects.”While the Belmont Report has enduring significance, the landscape of biomedical research has changed in important ways over the past 40 years. Additionally, a large and growing body of...

The Belmont Report begins with the sentence, “It is important to distinguish between biomedical and behavioral research, on the one hand, and the practice of accepted therapy on the other”. Writing an essay in a journal issue devoted to the 40th anniversary of the Belmont Report offers an opportunity not only to examine critically a theme addressed in this remarkable document—the distinction between research and practice—but also to reflect on the role of this theme as a major dimension of my work as a bioethics scholar. Encompassing only 12 pages of text, the Belmont Report is a seminal and rich examination of basic norms defining the ethics of biomedical research. I have read the...

Elderly individuals are at higher risk of serious illness and death if they become infected by the coronavirus. During the current pandemic, my wife and I, at ages seventy‐two and seventy‐one, respectively, have been paying a person laid off from a job to purchase groceries—a practice that exposes the shopper to risk of infection for our benefit. In this essay, I examine this practice with respect to the normative concepts of treating another person as a means, coercion, exploitation, and complicity.

Ethical concerns have been raised about the quality of informed consent by participants in phase 1 oncology trials. Interview surveys indicate that substantial proportions of trial participants do not understand the purpose of these trials—evaluating toxicity and dosing for subsequent efficacy studies—and overestimate the prospect of therapeutic benefit that they offer. In this article we argue that although these data suggest the desirability of enhancing the process of information disclosure and assessment of comprehension of the implications of study participation, they do not necessarily invalidate consent by phase 1 trial participants

The standard argument in favor of the practice of voluntary physician-assisted death, by means of assisted suicide or active euthanasia, rests on liberal, individualistic grounds. It appeals to two moral considerations: (1) personal self-determination—the right to choose the circumstances and timing of death with medical assistance; and (2) individual well-being—relief of intolerable suffering in the face of terminal or incurable, severely debilitating illness. One of the strongest challenges to this argument has been advanced by Daniel Callahan. Callahan has vigorously attacked the practice of physician-assisted death and the goal of legalization as deep affronts to values of community: “By assuming that the relief of suffering is a goal important enough to legitimate killing as a way of achieving it, we corrupt the idea of such relief as a social goal and duty. We cease helping to bear one another's suffering, but eliminate altogether the person who suffers. We thereby jeopardize both the future of self-determination and the kind of community that furthers its members' capacity to bear one another's suffering. Why bear what can be eliminated altogether?” In another passage Callahan remarks, “For there is a deep sense in which suicide and euthanasia are likely to represent, at least in part, a failure of the community, whether that of the intimate community of family and friends, or the larger civic community, to respond to the needs of another.”

I came to bioethics scholarship in 1990 at age 42. My first two published papers were solo-authored. But subsequently most of my bioethics research, including 223 articles and 22 book chapters written with many coauthors, has been collaborative; and my one monograph book, Death, Dying, and Organ Transplantation, was a collaborative venture with Robert Truog. As my academic field is philosophy, where collaborative work is rare, I had no background for doing this. I lacked any formal mentorship in bioethics and thus had no training in doing collaborative research.Looking back, I see three motivations for doing collaborative research and writing in bioethics. First, I began teaching bioethics as an adjunct faculty...

Drawing the line on physician assistance in physician-assisted death continues to be a contentious issue in many legal jurisdictions across the USA, Canada and Europe. PAD is a medical practice that occurs when physicians either prescribe or administer lethal medication to their patients. As more legal jurisdictions establish PAD for at least some class of patients, the question of the proper scope of this practice has become pressing. This paper presents an argument for restricting PAD to the terminally ill that can be accepted by defenders as well as critics of PAD for the terminally ill. The argument appeals to fairness-based paternalism and the social meaning of medical practice. These two considerations interact in various ways, as the paper explains. The right way to think about the social meaning of medical practice bears on fair paternalism as it relates to PAD and vice versa. The paper contends that these considerations have substantial force when directed against proposals to extend PAD to non-terminally ill patients, but considerably less force when directed against PAD for the terminally ill. The paper pays special attention to the case of non-terminally ill patients who suffer from treatment-resistant depression, as these patients present a potentially strong case for extending PAD beyond the terminally ill.

The placebo effect, in recent years, has been the focus of extensive scientific inquiry and public fascination, as reflected in articles in the news media. Authors writing about placebo effects often mention the goal of harnessing the placebo effect for the benefit of patients in clinical practice. This suggests that the placebo effect is like a powerful horse, which needs to be put in harness in order to do useful work. However, developing an accurate understanding of what has been labelled, often misleadingly, as the "placebo effect" and taking advantage of this phenomenon have been hampered by the conceptual muddle surrounding this topic. To continue the equine metaphor...

We argued last year in this journal that extensive integration of research and care is a worthy goal of health system design, and we second the call from Ruth Faden and colleagues to move toward learning health care systems. As they recognize, learning health care systems demand the coordination of research and medical ethics—two sets of normative commitments that have long been considered distinct. In offering a novel ethics framework for such systems, Faden et al. advance the scholarly debate about how best to do this and challenge us to think more deeply about its practical implications. However, we believe that at least three issues they raise require additional attention. First, the research‐care distinction has more normative bite than they are willing to concede. Second, the role for independent oversight requires clarification. Finally, they neglect the concept of stewardship as a guiding obligation of learning health care systems.

I’m writing to underscore one point, which should be obvious, but which all too often has been neglected in the literature on medical futility. The futility of an action or an intervention is always relative to some goal. Consider the classical example of futility: carrying water in a sieve. If your goal is to transport a quantity of water without spilling some or all of it, then it is futile to do so by placing it in a sieve. But we can readily imagine children carrying water in the backyard in a sieve, enjoying the water spilling out on the grass and trickling down their legs. It’s not futile to serve that goal of having fun. The salience of this point can be tested by examining its relevance to...

Although informed consent is important in clinical research, questions persist regarding when it is necessary, what it requires, and how it should be obtained. The standard view in research ethics is that the function of informed consent is to respect individual autonomy. However, consent processes are multidimensional and serve other ethical functions as well. These functions deserve particular attention when barriers to consent exist. We argue that consent serves seven ethically important and conceptually distinct functions. The first four functions pertain principally to individual participants: (1) providing transparency; (2) allowing control and authorization; (3) promoting concordance with participants' values; and (4) protecting and promoting welfare interests. Three other functions are systemic or policy focused: (5) promoting trust; (6) satisfying regulatory requirements; and (7) promoting integrity in research. Reframing consent around these functions can guide approaches to consent that are context sensitive and that maximize achievable goals.

Kierkegaard famously declared that life is lived forwards but understood backwards. The retrospective look at one's career necessarily takes the form of a narrative reconstruction. Our lives are messier than the stories we tell about them.I first took up serious study of philosophy as a sophomore at Columbia College in 1967. The extensive core curriculum at Columbia exposes all students to a sampling of classic texts in philosophy. Some inkling of a more than passing interest in philosophy, which I can't now recall, must have induced me take an elective course devoted to that subject. It was taught in the old-fashioned way of detailed examination of classic texts—the way that I believe it is best to learn about...

Bioethics has been an interdisciplinary field since its inception. From the founding of the Hastings Center in 1969 and the Kennedy Institute of Ethics in 1971, scholars from many disciplines have come together to create a field of study strengthened by its interdisciplinarity. In this special issue of Perspectives in Biology and Medicine, we celebrate the interdisciplinary character of bioethics by means of essays by eight distinguished bioethics scholars hailing from backgrounds in philosophy, law, medicine, nursing, public health, history, sociology, and narrative methods. Each contributor offers a personal perspective on their journey into bioethics from a particular disciplinary background...

Something has changed in America with respect to facing death. As I write this review of When Breath Becomes Air by Paul Kalanithi, it is number one on the New York Times nonfiction bestseller's list; number 10 is Being Mortal by Atul Gawande, on the list for 62 weeks. A few years ago, Christopher Hitchens's Mortality, a remarkable narrative of his living in the face of dying from esophageal cancer, also was a bestseller. While denial of death was thought to be an American characteristic, this may be true no longer; or at least the public shows a strong interest in narratives about mortality.To what extent does the appetite of the reading public signify a changed perspective on mortality?...

Mood disorders, including major depressive disorder and bipolar disorder, are highly prevalent, frequently disabling, and sometimes deadly. Additional research and more effective medications are desperately needed, but clinical trials research in mood disorders is fraught with ethical issues. Although many authors have discussed these issues, most do so from a theoretical viewpoint. This manuscript uses available empirical data to inform a discussion of the primary ethical issues raised in mood disorders research. These include issues of consent and decision-making capacity, including patients’ motivations for participating in research. We also address drug withdrawals, placebo controls, and the overall safety of research. Finally, we examine the extant literature for studies discussing potential indirect benefits of clinical trials research to participants. Taken together, the evidence suggests that clinical trials research incorporating drug withdrawals and placebo controls can be conducted safely and ethically, even in patients with severe or treatment-resistant mood disorders. In fact, given the dearth of effective treatment options for this population, it is our opinion that a moral imperative exists to extend the offer of research participation to severely ill or treatment-resistant groups.

Recently, Canada’s National Post described in detail the death by lethal injection of a 94-year-old man, living alone, who had multiple medical problems but was not terminally ill. His son helped find a physician willing to administer lethal medication soon after his father told him he “wasn’t planning on adding another digit” to his age. The physician who complied with the request is a leading advocate for assisted death in Canada, who reportedly has been responsible for more than 30 life-terminating acts within the few months since the law was passed in June 2016. The son of the man who died by active euthanasia declared, “Dad got the death he wanted.” Should a legal option of...