Franklin Miller

What is a good death? How does one live well in the face of (potentially) terminal illness? Philosophical analysis has a great deal to offer in approaching these puzzling and deep questions. Perhaps more can be gleaned of cultural and personal significance, however, from narratives of those who have been forced to face these questions in their lives and in their writings. The greatest yield, I suggest, comes from combining narrative with philosophical reflections.Commentators have frequently contrasted the way we die today with deaths in the past (Callahan 1993, 2003; Hardwig 2009). Before the first half of the 20th century, people mainly died from infectious diseases, with a rapid onset and swift progression to ..

The practice of transplantation of vital organs from “brain-dead” donors is in a state of theoretical disarray. Although the law and prevailing medical ethics treat patients diagnosed as having irreversible total brain failure as dead, scholars have increasingly challenged the established rationale for regarding these patients as dead. To understand the ethical situation that we now face, it is helpful to revisit the writings of the philosopher Hans Jonas, who forcefully challenged the emerging effort to redefine death in the late 1960s.

In The Healer's Power, Howard Brody placed the concept of power at the heart of medicine's moral discourse. Struck by the absence of “power” in the prevailing vocabulary of medical ethics, yet aware of peripheral allusions to power in the writings of some medical ethicists, he intuited the importance of power from the silence surrounding it. He formulated the problem of the healer's power and its responsible use as “the central ethical problem in medicine.” Through the prism of power he refracted a wide range of ethical problems, from informed consent to truth-telling, from confidentiality to futility, from the physician's fantasies to the physician's virtues. At times this prism shed new light on old problems, enabling us to see from an unexpected angle the elements of which the problem was composed. At other times it exposed issues of ethical significance that had been neglected in the bioethics literature.

Current guidelines on investigators' responsibilities to communicate research results to study participants may differ on whether investigators should proactively re-contact participants, the type of results to be offered, the need for clinical relevance before disclosure, and the stage of research at which results should be offered. Lack of consistency on these issues, however, does not undermine investigators' obligation to offer to disclose research results: an obligation rooted firmly in the principle of respect for research participants.

Next SectionThere has been considerable debate surrounding the ethics of sham-controlled trials of procedures and interventions. Critics argue that these trials are unethical because participants assigned to the control group have no prospect of benefit from the trial, yet they are exposed to all the risks of the sham intervention. However, the placebo effect associated with sham procedures can often be substantial and has been well documented in the scientific literature. We argue that, in light of the scientific evidence supporting the benefits of sham interventions for pain and Parkinson's disease that stem from the placebo effect, these sham-controlled trials should be considered as offering potential direct benefit to participants. If scientific evidence demonstrates the positive effect of placebo from sham interventions on other conditions, sham-controlled trials of interventions for the treatment of these conditions should be considered to have prospects of benefit as well. This potential benefit should be taken into account by research ethics committees in risk-benefit analyses, and be included in informed consent documents

In ‘Placebo treatments, informed consent, and “the grip of a false picture”’ Shane Nicholas Glackin argues that if a physician offers a patient an inert placebo with the following disclosure, this is compatible with informed consent and is not deceptive: ‘I would like to offer you a pill which I believe can help lessen your suffering. I do not know exactly how it works. I have other pills to offer whose mechanism is clearer, but I am not sure that they will work better for you, and they may also entail more serious side effects’. According to Glackin, telling patients that the recommended treatment is an inert placebo is providing incidental information, analogous to telling a patient the chemical details of an active drug. He argues that this information would influence a patient's decision only if she was ‘in the grip of a false picture’ that inert drugs do not have physical effects on patients’ bodies. We contend that this disclosure typically is incompatible with informed consent and typically is deceptive. We give an example of a transparent placebo disclosure, that is, a disclosure that is compatible with informed consent and is not deceptive.

In the midst of the recent Ebola outbreak, scientific developments involving infection challenge experiments on nonhuman primates (NHPs) sparked hope that successful treatments and vaccines may soon become available. Yet these studies pose a stark ethical quandary. On the one hand, they represent an important step in developing novel therapies and vaccines for Ebola and the Marburg virus, with the potential to save thousands of human lives and to protect whole communities from devastation; on the other hand, they intentionally expose sophisticated animals to severe suffering and a high risk of death. Other studies that infect NHPs with a lethal disease in order to test interventions that may prove beneficial for humans pose the same ethical difficulty. Some advocates have argued that all research on primates should be phased out, and ethicists have questioned whether a moral justification of primate research is possible. A 2010 European Union directive banned virtually all research on great apes, and 2013 guidelines from the National Institutes of Health (NIH), based upon recommendations in an influential 2011 Institute of Medicine (IOM) report, eliminated most biomedical research with chimpanzees in the United States. But studies involving other NHPs face no comparable restrictions.Should research on NHPs other than great apes be subject to tighter restrictions than it currently is? In this article, we explore this general question in the context of one particular type of biomedical research: infection challenge studies. We advocate a presumptive prohibition on infection challenge experiments in NHPs, but we also argue that exceptions to this prohibition are permissible, subject to strict substantive and procedural safeguards, when necessary to avert substantial loss of human life or severe morbidity for a substantial number of people.

In a recent article in this Journal, Shlomo Cohen and Haim Shapiro introduce the concept of “comparable placebo treatments” —placebo treatments with biological effects similar to the drugs they replace—and argue that doctors are not being deceptive when they prescribe or administer CPTs without revealing that they are placebos. We critique two of Cohen and Shapiro’s primary arguments. First, Cohen and Shapiro argue that offering undisclosed placebos is not lying to the patient, but rather is making a self-fulfilling prophecy—telling a “lie” that, ideally, will become true. We argue that offering undisclosed placebos is not a “lie” but is a straightforward case of deceptively misleading the patient. Second, Cohen and Shapiro argue that offering undisclosed CPTs is not equivocation. We argue that it typically is equivocation or deception of another sort. If justifiable, undisclosed placebo use will have to be justified as a practice that is deceptive in most instances.

Physicians commonly recommend ?placebo treatments?, which are not believed to have specific efficacy for the patient's condition. Motivations for placebo treatments include complying with patient expectations and promoting a placebo effect. In this article, we focus on two key empirical questions that must be addressed in order to assess the ethical legitimacy of placebo treatments in clinical practice: 1) do placebo treatments have the potential to produce clinically significant benefit? and 2) can placebo treatments be effective in promoting a therapeutic placebo response without the use of deception? We examine evidence from clinical trials and laboratory experiments bearing on these two questions. The conclusion is reached that based on currently available evidence, it is premature to judge whether placebo treatments are ethically justifiable, with the possible exception of acupuncture for pain relief

In lieu of an abstract, here is a brief excerpt of the content:Introduction to the Special SectionFranklin G. MillerHappy is a female elephant who has been confined at the Bronx Zoo for over 40 years. In 2018 the Nonhuman Rights Project sued the Wildlife Conservation Society, which manages the zoo, seeking habeas corpus for Happy in order to release her to an elephant sanctuary. Numerous amicus curiae briefs were filed in favor and against the petition on behalf of Happy. The case reached the highest court in New York State, which denied the petition of the plaintiff in June 2022.This special section includes views on the case of Happy by David DeGrazia, Martha Nussbaum, and Christine Korsgaard, three distinguished moral philosophers who have made significant contributions to animal ethics. The essays by Martha Nussbaum and Christine Korsgaard are drawn from the amicus briefs that they filed in the legal proceedings, which they agreed could be published here.Professor Nussbaum applies her "capabilities approach" as a foundation for promoting wellbeing and recognizing rights to Happy and to elephants in general. She argues that Happy is a being with a meaningful life and is entitled to be treated with respect and dignity, which is incompatible with her conditions of confinement at the zoo. Professor Korsgaard applies her understanding of the moral philosophy of Immanuel Kant to the case of Happy—a "cognitively sophisticated [End Page 1] animal" which, like human beings, should be treated as an end in herself and not merely as a means to the purposes of human beings. Professor DeGrazia, in an invited essay, analyzes the meanings of "person" and examines the pertinent characteristics of elephants that make them at least "borderline persons," with the moral status of possessing basic rights.While Happy remains confined at the Bronx Zoo, these three incisive contributions challenge readers to reflect on the ethical treatment of nonhuman animals, especially those with complex and rich capacities of intelligence and emotion. [End Page 2]Franklin G. MillerWeill Cornell Medical College, New YorkCopyright © 2023 Johns Hopkins University Press...

Hospice is the premiere end of life program in the United States, but its requirement that patients forgo disease-directed therapies and that they have a prognosis of 6 months or less means that it serves less than half of dying patients and often for very short periods of time. Palliative care offers careful attention to pain and symptom management, added support for patients and families, and assistance with difficult medical decision making alongside any and all desired medical treatments, but it does not include a comprehensive system of care as is provided by hospice. The practice of palliative care and hospice is filled with sometimes overt (requests for hastened death in an environment where such acts are legally prohibited) and other times covert (the delay in palliative care referral because the health care team believes it will undermine disease directed treatment) ethical issues. The contributors to this volume use a series of case presentations within each chapter to illustrate some of the palliative care and hospice challenges with significant ethical dimensions across the three overarching domains: 1) care delivery systems; 2) addressing the many dimensions of suffering; and 3) difficult decisions near the end of life. The contributors are among the most experienced palliative care, hospice and ethics scholars in North America and Western Europe. Each has been given relatively free reign to address what they feel are the most pressing ethical challenges within their domain, so a wide range of positions and vantage points are represented. As a result, the volume provides a very diverse ethical exploration of this relatively young field that can deepen, stretch, and at times confront any simple notion of the challenges facing patients, their families, professional caregivers, and policy makers.

Prevailing ethical thinking about informed consent to clinical research is characterized by theoretical confidence and practical disquiet. On the one hand, bioethicists are confident that informed consent is a fundamental norm. And, for the most part, they are confident that what makes consent to research valid is that it constitutes an autonomous authorization by the research participant. On the other hand, bioethicists are uneasy about the quality of consent in practice. One major source of this disquiet is substantial evidence of the “therapeutic misconception”—the tendency of patient-subjects in clinical trials to confuse participating in research with receiving personalized medical care. This ..

Traditionally, biomedical research has been devoted to improvement in the understanding and treatment or prevention of disease. Building on the knowledge generated by the long history of disease-oriented research, the next few decades will witness an explosion of biomedical enhancements to make people faster, stronger, smarter, less forgetful, happier, prettier, and live longer (Turner et al. 2003; Vastag 2004; Rose 2002). As with other biomedical interventions, research to assess the safety and efficacy of these enhancements in humans should be conducted before their introduction into clinical practice.1 However, various concerns regarding the ethics of enhancement research could be raised. Those who ..

Der folgende Artikel ist im Jahr 2003 unter dem Titel „Clinical Pragmatism: A Method of Moral Problem Solving“ in dem Sammelband „Pragmatic bioethics“ erschienen, welcher sich mit der Bedeutung der pragmatistischen Philosophie für die Praxis befasst. In dem vom Internisten und Bioethiker Joseph J. Fins, dem Thoraxchirurgen Matthew D. Bacchetta und dem Philosophen und Medizinethiker Franklin G. Miller verfassten Beitrag wird der pragmatistische Ansatz in der klinischen Ethik anhand eines Fallbeispiels gleichzeitig beschrieben, begründet und demonstriert. Obgleich die Denkrichtung der pragmatistischen Philosophie sowohl wissenschaftstheoretisch wie praktisch hoch bedeutsam ist – ohne diese ist weder die heutige sozialwissenschaftliche Forschung noch die angewandte, insbesondere die klinische Ethik denkbar –, werden pragmatistische Ansätze im deutschsprachigen Raum bis heute eher rudimentär rezipiert.

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...