In Disability's Challenge to Theology: Genes, Eugenics, and the Metaphysics of Modern Medicine (Notre Dame Press, 2022), Devan Stahl establishes an ambitious goal: develop a Christian bioethics that is metaphysically grounded, informed by the experience of disability, and culturally compelling. She argues that personhood is not the possession of certain abilities; all humans are worthy of dignity and respect because they are created by God in God's image. According to Stahl, persons should be valued for who they are and treated (...) with radical acceptance. Interventions on the body should be judged on whether they promote flourishing, and such judgments should be informed by the experience of disability and made in community. These arguments will be of interest to Christian bioethics, disability scholars, and those interested in the capability approach, but clinical ethicists may find Stahl's book less compelling. (shrink)

Bioethics is reexamining how to implement diversity, equity, inclusion, and justice concerns into scholarship. However, bioethicists should question the categories used to define diversity. The act of categorization is value laden, and classification systems confer power and benefits and generate harms. For example, what conditions count as disabilities? We should consider the equity implications of offering only “male” and “female” options for self-identification in health records. However, we should also interrogate all ideas about categorization, including how categories are formed, why (...) they are formed, and who decides. Bioethicists cannot comprehend fully what equity and justice mean for underrepresented, underserved, or marginalized people until there is an understanding of how the boundaries of marginalization are created. (shrink)

In 2022, the U.S. Supreme Court removed constitutional protection from the individual's right to end a pregnancy. In Dobbs v. Jackson Women's Health Organization, the Court invalidated previous rulings protecting that right as part of the individual liberty and privacy interests embedded in the U.S. Constitution. Now, many observers are speculating about the fate of other rights founded on those interests. The Dobbs ruling conflicts with the Court's 1990 Cruzan decision restricting the government's power to interfere with personal medical choices. (...) The language and reasoning in Dobbs and Cruzan offer guidance on how the Court might address future cases involving the right to refuse life-sustaining treatment. The decisions also point to policy strategies for preserving that right. (shrink)

The People's Hospital: Hope and Peril in American Medicine, by Ricardo Nuila (Scribner, 2023), is a brilliant analysis of the reasons for the failure of our present health care system to meet the needs of patients. It is also a setting for the stories of patients whom Nuila encounters as a hospitalist at Ben Taub, a safety-net hospital (in the shadow of the medical metropolis of Houston) that cares for all who arrive at its doors. The book is a masterful (...) weaving of data on how money has corrupted the medical establishment and the effects on patients and those who love them. (shrink)

Unrepresented patients—people without capacity to make medical decisions who also lack a surrogate decision-maker—form a large and vulnerable population within the United States health care system. The burden of unrepresentedness has rightly prompted widespread calls for more and better advance care planning, in which still-healthy patients are encouraged to designate a surrogate decision-maker and thus avoid the risk of becoming unrepresented. However, we observe that some patients, even with available social contacts and access to adequate advance care planning services, simply (...) decline to name a surrogate decision-maker. We propose a novel concept of “informed refusal of representation” (“IRR”) to characterize the position held by some such patients, who are often overlooked in prior work on unrepresentedness. We then discuss physicians’ ethical obligations in the face of such a refusal and avenues by which physicians can support patients without surrogates in receiving goal-concordant care. (shrink)

In this article, I reject the “principlism” of Tom Beauchamp and James Childress and argue that respect for autonomy is, and ought to be, the fundamental value of bioethics. To do so, I offer a reconstruction of what I call the field's “founding myth,” a genealogy that affords primacy to the right to be respected as a human being with dignity. Next, I examine the relationship between this basic right and a derivative right of autonomy. I suggest that principlism has (...) promulgated an uncharitable understanding of respect for autonomy, one that ensures that the principle cannot occupy the central position I claim for it. Finally, I sketch a more plausible understanding of respect for autonomy and explore its implications. (shrink)

Over the past several decades in which access to abortion has become increasingly restricted, parents' autonomy in medical decision-making in the realms of fetal care and neonatal intensive care has expanded. Today, parents can decide against invasive medical interventions at gestational ages where abortions are forbidden, even in cases where neonates are expected to be seriously ill. Although a declared state interest in protecting the lives of fetuses and newborns contributes to justifications for restricting women's autonomy with regards to abortion, (...) it does not fully explain this discrepancy. We believe that social portrayals of women as complying with or shirking their reproductive function play a major role in explaining it. The growing divide between a woman's rights as a reproductive being and as a parent suggest that abortion restriction is rooted in a historical societal desire for women to serve as reproducers and in the corresponding fear of them abandoning this allotted role in pursuit of social equality. The Dobbs v. Jackson (2022) decision is not based in a view of abortion as a medical act occurring between a doctor and patient, as Roe v. Wade (1973) did, but decision-making about fetal therapy or NICU care is still viewed as occurring between a doctor and patient or surrogate because in this act a woman is seen as fulfilling her role as mother. (shrink)

This article presents a radical claim: American medical ethics is broken, and it needs love to be healed. Due to a unique set of cultural and economic pressures, American medical ethics has adopted a mechanistic mode of ethical reasoning epitomized by the doctrine of principlism. This mode of reasoning divorces clinicians from both their patients and themselves. This results in clinicians who can ace ethics questions on multiple-choice tests but who fail either to recognize a patient's humanity or to navigate (...) the ethical quandaries into which they are frequently thrown. Drawing on personal experience as well as the philosophical work of Augustine of Hippo, Simone Weil, and Iris Murdoch, we propose a novel ethical approach grounded in a conception of neighbor love, specifically, the virtue of love understood as attention to a sufferer's humanity. We conclude with five practical recommendations for reimagining medical ethics education oriented around the virtue of love. (shrink)

Legal precedent, professional-society statements, and even many medical ethicists agree that some situations may call for a clinician to engage in an act of lying or nonlying deception of a patient or patient's family member. Still, the moral terrain of clinical deception is largely uncharted, and when it comes to practical guidance for clinicians, many might think that ethicists offer nothing more than the rule never to deceive. This guidance is insufficient to meet the real-world demands of clinical practice, and (...) this article endeavors to articulate a framework to help clinicians better navigate the ethics of clinical deceit. The framework articulates four morally relevant dimensions of a potential deceptive act that should be examined to better determine the moral justification that might be required: the target of the act, the nature of the information, the nature of the act, and the context of the act. (shrink)

As many in the United States feel a need to take a side in the ongoing culture wars, the people who make up the field of bioethics have an obligation to directly engage with those who hold different political views. If bioethics is an academic field, it must also affirm the overall values of the academy to continually challenge central assumptions. If the field wishes to be a part of the development of public policy, it must be able to construct (...) such policies that in some fundamental manner honor the values of the opposition. (shrink)

In this brief commentary, I offer an appreciative yet critical analysis of Abram Brummett and Erica Salter's article, “Mapping the Moral Terrain of Clinical Deception.” I challenge the authors to clarify their choice of the term “deception” (as opposed to “lying” or “dishonesty”), and I explain how these different terms may affect one's moral analysis. I also draw attention to the authors’ claim that veracity is the ethical default of clinicians. I argue that their failure to defend this claim renders (...) their framework more limited in its usefulness than they seem to acknowledge. While their framework does an excellent job of identifying morally salient features of clinical deception, it cannot be used to measure the strength of justification for an act of deception apart from a normative conception of truthfulness. (shrink)

In the lead article in the January-February 2023 issue of the Hastings Center Report, Abram Brummett and Erica Salter provide a conceptual framework to help physicians think through the ethics of deceiving a patient or someone closely connected to the patient. Brummett and Salter identify four main ethical features of any act of clinical deception and elaborate on how, in a given case, these features together influence the degree to which a deception could be justified. A second article in this (...) issue presents an ethnographic study of the effect of the Covid-19 pandemic on critical care workers in an intensive care unit. The authors describe a level and form of moral distress that, they argue, goes beyond what the term “moral distress” captures. The authors offer “distressed work” to better mark the broad consequences for care workers’ roles, occupations, and vocations. (shrink)

Ableist attitudes and structures regarding disability are increasingly recognized across all sectors of healthcare delivery. After Dobbs, novel questions arose in the USA concerning how to protect reproductive autonomy while avoiding discrimination against and devaluation of disabled persons. As a case study, we examine the Louisiana’s Department of Public Health August 1st Emergency Declaration, “List of Conditions that shall deem an Unborn Child ‘Medically Futile.’” We raise a number of medical, ethical, and public health concerns that lead us to argue (...) the declaration should be rescinded. The ethically objectionable declaration provides valuable lessons concerning how to uphold both reproductive and disability justice in a post-Dobbs landscape. (shrink)

This letter responds to the article “On the Authority of Advance Euthanasia Directives for People with Severe Dementia: Reflections on a Dutch Case,” by Henri Wijsbek and Thomas Nys, in the September-October 2022 issue of the Hastings Center Report.

In Abram Brummett and Erica K. Salter's excellent paper, “Mapping the Moral Terrain of Clinical Deception,” they rightly note that it is sometimes ethically appropriate for health care professionals to deceive patients and families. However, they also note that because doing so violates a prima facie duty of honesty, the ethical burden of proof falls upon the deceiver. Hence, they also provide a sophisticated framework for determining whether any given case is warranted. I applaud their overall approach but also critique (...) some of their claims, in particular, their conclusion that lies of commission require greater justification than those of omission and their conflation of the principles of beneficence and nonmaleficence. I also urge them to give greater attention to how power asymmetries should be accounted for and to the impact such deceptive choices might have on the clinician's character. (shrink)

In Conceiving People: Genetic Knowledge and the Ethics of Sperm and Egg Donation (Oxford University Press, 2021), Daniel Groll argues why people who use donated sperm or eggs to have children ought to use a known donor. His main argument for this position is that a child conceived in this way will have a foreseeable, significant interest in acquiring genetic knowledge. However, Groll addresses issues that are of interest to anyone who thinks about the nature of families and parent-child relationships. (...) For example, what obligations or responsibilities does a parent have to their child? What makes someone a parent? And what is the significance to one's identity of knowing about one's genetic origins? While a claim about access to genetic knowledge lies at the heart of Groll's book, he is all too aware of the social forces that influence people to care about their genetic origins. His prescriptions, ultimately, reflect this reality. (shrink)

This ethnographic study introduces the term “distressed work” to describe the emergence of chronic frictions between moral imperatives for health care workers to keep working and the dramatic increase in distress during the Covid-19 pandemic. Interviews and observant participation conducted in a hospital intensive care unit during the Covid-19 pandemic reveal how health care workers connected job duties with extraordinary emotional, physical, and moral burdens. We explore tensions between perceived obligations of health care professionals and the structural contexts of work. (...) Key findings cluster around the moral imperatives of health care work and the distress that work engendered as work spaces, senses of vocation, patient and family interactions, and end-of-life care shifted. While the danger of working beyond limits has long been an ordinary feature of health care work, it has now become a chronic crisis. Assessing this problem in terms of distressed work and its structural contexts can better address effective, worker-informed responses to current health care labor dilemmas. (shrink)

A key public health measure has received far too little attention over the course of the Covid-19 pandemic: paid sick leave policies that encourage people at risk of spreading disease to stay home rather than come to work. The United States is one of the only developed countries that fails to guarantee paid sick leave at the federal level, leaving a patchwork of state and private policies that undersupply time off when people are contagious and protect top wage earners at (...) wildly disproportionate rates compared with what workers with lower incomes experience. Other countries have shown that sick leave mandates are neither unjustified burdens on employers nor gratuitous giveaways to employees. In fact, sick leave saves on health care costs by making employees less likely to infect coworkers, to be absent for longer themselves, or to need treatment in expensive hospital emergency departments. Nationally guaranteed sick leave is urgently needed to promote public health. (shrink)

The Living Organ Donor as Patient: Theory and Practice, by Lainie Friedman Ross and J. Richard Thistlethwaite, Jr. (Oxford University Press, 2021), offers a stimulating opportunity to consider the ethics of living solid organ donation in more depth. Ross and Thistlethwaite detail a framework of five principles—respect for persons, beneficence, justice, vulnerability, and responsibility—that positions prospective living donors as patients. The authors engage readers by applying these principles across a series of examples, issues, and possibilities, the “practice.” Readers may wish (...) to reflect further on the framework's implications, including those related to vulnerability, power, and social justice (to name a few), particularly as these relate to the “theory” of this book. The book is well worth the read for clinicians, ethicists, and others involved in organ donation and transplantation. (shrink)

In this commentary, I explore the usefulness of the framework Abram Brummett and Erica K. Salter present in their article “Mapping the Moral Terrain of Clinical Deception.” Deception cases are divisive because they nearly always evoke the metadilemma of clinical ethics: a clash between duties (in these cases, truth telling) and consequences (whatever good might come of the lie). Here, I describe a patient case in which the clinical team considered deceiving a patient about his pain-medicine dosage in exchange for (...) his allowing the clinicians to properly care for his percutaneous endoscopic gastrostomy tube stoma, so as to prevent infection. Applying the framework that Brummett and Salter have developed helped our clinical team parse the numerous complex issues involved. The nuances of our case also illustrated additional ways in which the ethics of deception needs to be further refined. (shrink)

Home diagnostic testing is becoming part of the modern medical landscape, but many ethical and policy questions remain unresolved. Most of them first surfaced during the long regulatory deliberations over the home HIV test, the first home test for a contagious illness sold in the United States. Between 1989 and 2012, federal regulators and their consultants debated the ideal metrics for such a test, its benefits, and its potential harms for both individuals and communities. Ultimately, two iterations of the home (...) HIV test were marketed in the United States; neither one of them changed the course of the national HIV epidemic, as hoped. This failure has powerful implications for home testing for other contagious diseases. (shrink)

In this consensus report by a diverse group of academics who conduct and/or are concerned about social and behavioral genomics (SBG) research, the authors recount the often-ugly history of scientific attempts to understand the genetic contributions to human behaviors and social outcomes. They then describe what the current science—including genomewide association studies and polygenic indexes—can and cannot tell us, as well as its risks and potential benefits. They conclude with a discussion of responsible behavior in the context of SBG research. (...) SBG research that compares individuals within a group according to a “sensitive” phenotype requires extra attention to responsible conduct and to responsible communication about the research and its findings. SBG research (1) on sensitive phenotypes that (2) compares two or more groups defined by (a) race, (b) ethnicity, or (c) genetic ancestry (where genetic ancestry could easily be misunderstood as race or ethnicity) requires a compelling justification to be conducted, funded, or published. All authors agree that this justification at least requires a convincing argument that a study's design could yield scientifically valid results; some authors would additionally require the study to have a socially favorable risk-benefit profile. (shrink)