Generative artificial intelligence (AI) has the potential to transform many aspects of scholarly publishing. Authors, peer reviewers, and editors might use AI in a variety of ways, and those uses might augment their existing work or might instead be intended to replace it. We are editors of bioethics and humanities journals who have been contemplating the implications of this ongoing transformation. We believe that generative AI may pose a threat to the goals that animate our work but could also be (...) valuable for achieving those goals. In the interests of fostering a wider conversation about how generative AI may be used, we have developed a preliminary set of recommendations for its use in scholarly publishing. We hope that the recommendations and rationales set out here will help the scholarly community navigate toward a deeper understanding of the strengths, limits, and challenges of AI for responsible scholarly work. (shrink)

Biomedical research recruitment today focuses on including participants representative of global genetic variation—rightfully so. But ethnographic attention to practices of inclusion highlights how this agenda often transforms into “predatory inclusion,” simplistic pushes to get Black and brown people into genomic databases. As anthropologists of medicine, we argue that the question of how to get from diverse data to concrete benefit for people who are marginalized cannot be presumed to work itself out as a byproduct of diverse datasets. To actualize the (...) equitable translation of genomics, practitioners need to place the impacts of ancestral genetic difference in the scope of much more impactful social determinants. For this to happen, multidisciplinary expertise needs to be leveraged, and current, structurally unequal health care systems ultimately need to transform. As modest steps toward this goal, new models for benefit‐sharing must be developed and implemented to mitigate existing inequality between data donors and the entities profiting from that data. (shrink)

Agency is talked about by many as something that people living with dementia lose, once they've lost much else—autonomy, identity, and privacy, among other things. While the language of loss may capture some of what transpires in dementia, it can obscure how people living with dementia and their loved ones share agency through sharing capacities for memory, language, and decision‐making. We suggest that one consequence of adopting a framework of loss is that it makes the default response to changes in (...) agency the substitution of a family member's agency for the purported lost agency of someone living with dementia. We argue for an alternative framework in which sharing agency is recognized as a central feature of living with dementia. Building on the work of relational theorists, we argue for the value of thinking about agency in dementia as fundamentally shared, and explore potential implications for treatment, caregiver support, and building dementia‐friendly environments. (shrink)

Founded on a commitment to social justice and health equity, community health centers in the United States provide high‐quality primary care to underserved populations and address social drivers of health disparities. Through an examination of two books on the history of community health centers, Peace & Health: How a Group of Small‐Town Activists and College Students Set Out to Change Healthcare, by Charles Barber, and Community Health Centers: A Movement and the People Who Made It Happen, by Bonnie Lefkowitz, this (...) essay provides insight into what it takes to center social justice in community‐based health care organizations. As bioethics reorganizes itself around an emphasis on justice, scholars in bioethics have much to learn from colleagues in community health. (shrink)

This essay explores what the future may hold for bioethics if it continues its evolution toward a field that embraces systemic, collective‐level challenges; has a global scale and focus; emphasizes human flourishing; and seeks to have increased societal impact. As The Hastings Center considers strategic priorities for its research, public engagement, and impact, this essay reflects on where we have been and where we are going. It offers an expansive and inclusive vision for the future of bioethics, in order to (...) invite an open and wide‐ranging conversation about the future of our field and the role that The Hastings Center can and should play within it. (shrink)

Innovation is a key driver of care provision in assisted reproductive technologies (ART). ART providers offer a range of add‐on interventions, aiming to augment standard in vitro fertilization protocols and improve the chances of a live birth. Particularly in the context of commercial provision, an ever‐increasing array of add‐ons are marketed to ART patients, even when evidence to support them is equivocal. A defining feature of ART is hope—hope that a cycle will lead to a baby or that another test (...) or intervention will make a difference. Yet such hope also leaves ART patients vulnerable in a variety of ways. This article argues that previous attempts to safeguard ART patients have neglected how the use of add‐ons in commercial ART can exploit patients’ hopes. Commercial providers of ART should provide add‐ons only free of charge, under a suitable research protocol. (shrink)

How should the field of bioethics grapple with a history that includes ethicists who supported eugenics, scientific racism, and even Nazi medicine and also ethicists who created the salutary policy and practice responses to those heinous aspects of medical history? Learning humility from studying historical errors is one path to improvement; finding courage from studying historical strengths is another, but these can be in tension. This commentary lays out these paths and seeks to apply them both to a contemporary challenge (...) facing the field: why hasn't bioethics been more at the forefront of efforts to address inequities in health and health care? (shrink)

It is a common practice for family members to bring food to hospitalized loved ones. However, in some cases, this food contravenes a patient's dietary plan. Such situations can create significant tension and distrust between health care professionals and families and may lead the former to doubt a family's willingness or ability to support patient recovery. This case‐study essay offers an ethical analysis of these situations. We draw on Hilde Lindemann's work to argue that providing food to family members is (...) an important way that families discharge their moral functions of caring for their members and holding them in their identities. When family members are hospitalized, other means of performing these functions are limited. Acknowledging the ethical importance of feeding family members alongside the medical need for dietary restrictions, we offer strategies for creative problem‐solving that center diet as a subject for shared decision‐making and regular, ongoing communication among health care professionals, patients, and families. (shrink)

Although the technology for telemedicine existed before the Covid‐19 pandemic, the need to provide medical services while minimizing the risk of contagion has encouraged its more widespread use. I argue that, although telemedicine can be useful in certain situations, physicians should not consider it an adequate substitute for the office visit. I first provide a narrative account of the experience of telemedicine. I then draw on philosophical critiques of technology to examine how telemedicine has epistemic and ethical effects that make (...) some of the goods of medicine unavailable. Telemedicine rules out an embodied encounter between physician and patient, in which the sense of touch has special importance. The individualized attention facilitated by the in‐person visit may better sustain a caring physician‐patient relationship. Physicians should criticize attempts by administrators, insurers, or other parties to incentivize the wholesale replacement of traditional office visits with telemedicine. (shrink)

Clinical trials on healthy volunteers generate unique ethical challenges both because participants accept potential physical risks without the possibility of direct medical benefit and because participants’ financial motivations to enroll in trials could lead to their exploitation. Despite the large volume of published empirical studies and ethical analyses of healthy volunteer research, there has been little concerted effort to change how healthy‐volunteer research is overseen or regulated. A new collaborative effort to do so is the VolREthics (Volunteers in Research and (...) Ethics) Initiative. Launched in 2022, this initiative brings together an international community to engage questions about how healthy volunteers could best be protected from the risks of harm and exploitation while the validity of clinical trials is optimized. (shrink)

This letter responds to the article “Love Your Patient as Yourself: On Reviving the Broken Heart of American Medical Ethics,” by Tyler Tate and Joseph Clair, in the March‐April 2023 issue of the Hastings Center Report.

Should the assessment of decision‐making capacity (DMC) be risk sensitive, that is, should the threshold for DMC vary with risk? The debate over this question is now nearly five decades old. To many, the idea that DMC assessments should be risk sensitive is intuitive and commonsense. To others, the idea is paternalistic or incoherent, or both; they argue that the riskiness of a given decision should increase the epistemic scrutiny in the evaluation of DMC, not increase the threshold for DMC. (...) We respond to the critics’ main concerns by providing a comprehensive account of how risk‐sensitive DMC is coherent, avoids paternalism, and best fulfills the epistemic goal of DMC evaluations. (shrink)

Public health responses to the Covid‐19 pandemic included various measures to mitigate the spread of the virus. Among these, the most restrictive was a broad category referred to as “lockdowns.” We argue that the reasoning offered in favor of extended lockdowns—those lasting several months or longer—did not adequately account for a host of countervailing considerations, including the impact on mental illness, education, employment, and marginalized communities as well as health, educational, and economic inequities. Furthermore, justifications offered for extended lockdowns set (...) aside a basic tenet of public health ethics: restrictions on liberty and autonomy should be the least intrusive means of achieving the desired end. Since it is now clear that extended lockdowns cause severe harm to many vulnerable populations, the burden of proof is on those who would advocate for them, and there must be a much higher bar to implement an extended lockdown, with high‐quality evidence that the benefit would substantially exceed its harm. (shrink)

In Tyranny of the Gene: Personalized Medicine and Its Threat to Public Health (Knopf, 2023), James Tabery traces the ascendance of personalized or precision medicine in America, arguing that America's emphasis on genetics offers more hype than transformational power. In his examination of the power struggles, social relationships, and technological advances that centered the gene in American health policy, Tabery demonstrates how an intensive focus on genetics draws attention away from both the fundamental causes of health disparities and more‐effective changes (...) that could be made to developmental, physical, and social environments. American policy‐makers, health care institutions, funders, and bioethicists should not let the technological shine and attractive politics of personalized medicine continue to replace the hard but necessary work of addressing sociopolitical causes of disease and illness. (shrink)

The author responds to a letter by D. Brendan Johnson in the July‐August 2023 issue of the Hastings Center Report concerning his and Joseph Clair's article “Love Your Patient as Yourself: On Reviving the Broken Heart of American Medical Ethics.”.

The singular expertise of family physicians is the ability to manage complexity with pragmatism, both clinically and ethically. Telemedicine raises multiple questions about the nature of the patient‐physician relationship as manifested in clinical encounters. Some of these questions are concerning, underscoring the need to assess whether medical care is better with this new technology—or if it is just different or maybe even worse. It seems clear, however, that, regardless of its limitations, telemedicine is here to stay. The pragmatic complex ethical (...) question, then, is how all of us together—both medical professionals and society at large—will manage it. (shrink)

Covid‐19 heralded a natural experiment with telemedicine. My experience as a clinician was very positive, and learning how to use telemedicine has made me a better doctor. Telemedicine has flipped the medical service paradigm; families do not need to conform their busy lives to the medical office workflow. An appointment can be a virtual house call that takes less time for my patient's family and allows me to learn even more about their home. While there are limitations of telemedicine, there (...) are good ethical reasons for clinicians to support the broader use of telehealth, including equity, efficiency, effectiveness, and respecting preferences. Empirical health‐services research that assesses satisfaction, quality, and health outcomes will be necessary to determine the impact of telehealth on a population level to ensure that is used in a way that promotes equity in care. (shrink)

Philosophers have become newly interested in the ethics of sex. One promising feature of this new discussion is that it has been broadening our moral lens to include individuals whose sexual interests have historically been denied or ignored. One such group is the elderly. Contrary to popular belief, many elderly people want to have sex and see it as a regular part of their lives. If society harbors ignorance about or prejudice against elderly sexuality, it harbors stronger views against the (...) sexual expression of elderly people with dementia. People with dementia are often prohibited by nursing‐home staff, sometimes in extreme ways, from having sex with their partners. This prohibition is at least partly motivated by the goal of protecting the vulnerable. However, cutting people with dementia off from sex has negative health effects and is a needless restriction of their autonomy. In this article, I argue that the expanding moral lens in sexual ethics should include the sexual expression of elderly individuals with dementia and that their sexual expression should be respected. Specifically, I argue that many people with dementia are competent to consent to sexual activity with their long‐term partners. (shrink)

Gender‐affirming care is almost exclusively discussed in connection with transgender medicine. However, this article argues that such care predominates among cisgender patients, people whose gender identity matches their sex assigned at birth. To advance this argument, we trace historical shifts in transgender medicine since the 1950s to identify central components of “gender‐affirming care” that distinguish it from previous therapeutic models, such as “sex reassignment.” Next, we sketch two historical cases—reconstructive mammoplasty and testicular implants—to show how cisgender patients offered justifications grounded (...) in authenticity and gender affirmation that closely mirror rationales supporting gender‐affirming care for transgender people. The comparison exposes significant disparities in contemporary health policy regarding care for cis and trans patients. We consider two possible objections to the analogy we draw, but ultimately argue that these disparities are rooted in “trans exceptionalism” that produces demonstrable harm.. (shrink)

This commentary responds to “Home Care in America: The Urgent Challenge of Putting Ethical Care into Practice,” by Coleman Solis and colleagues, in the May‐June 2023 issue of the Hastings Center Report. More specifically, we respond to the authors’ call for “inquiry into the nature, value, and practice” of home care. We argue that the most urgently needed normative reset for thinking about care work is the replacement of dominant individualistic thinking with systemic thinking. Deepening a focus on the social, (...) economic, and historical forces that shape the state of contemporary care work will help bioethicists to argue more effectively for improvements to working conditions. In turn, better working conditions will ease the oppositional stance between caregivers and receivers that has been set up by the current system, enabling all parties involved to better pursue the feminist ethical ideal of care. (shrink)

This commentary responds to Samuel Director's article “Dementia and Concurrent Consent to Sexual Relations,” in the May‐June 2023 issue of the Hastings Center Report. In the article, Director sets out a set of conditions for sexual consent after one partner in a committed, long‐term relationship develops dementia. While we share Director's view that dementia patients should not be categorically cut off from sexual intimacy, we caution against the use of his approach as a rigid test for allowing sexual activity. Director's (...) analysis does not address the full range of plausibly permissible sexual relationships, which is unfortunate, as intimacy has consistently been linked to physical and psychological well‐being. Moreover, because decisions about sex often carry moral and emotional overtones, we propose that a dementia patient's prior values should sometimes be considered by caregivers in a measured way. (shrink)

As of this writing, twenty‐one states have passed laws barring transgender youth‐athletes from competing on public‐school sports teams in accordance with their gender identity. Proponents of these regulations claim that transgender females in particular have inherent physiological advantages that threaten a “level playing field” for their cisgender competitors. Existing evidence is limited but does not support these restrictions. Gathering more robust data will require allowing transgender youth to compete (rather than preemptively barring them), but even if trans females are shown (...) to retain some advantage, this would not have greater moral significance than the many other “fair” physical and economic advantages found across sports. These regulations deprive transgender youth, an exceptionally vulnerable population, from the vast physical, mental, and social benefits of sports. While we advocate for transgender inclusion under our current, gender‐segregated model of sport, we propose changes to the overarching structure that would promote a more inclusive and fairer athletic environment. (shrink)

Home care is one of the fastest‐growing industries in the United States, providing valuable opportunities for millions of older adults and people with disabilities to live at home rather than in institutional settings. Home care workers assist clients with essential activities of daily living, but their wages and working conditions generally fail to reflect the importance of their work. Drawing on the work of Eva Feder Kittay and other care ethicists, we argue that good care involves attending to the needs (...) of another out of a concern for their well‐being. Such care should be standard in the home care system. Yet, because of the pervasive racial, gender, and economic inequalities that the home care industry perpetuates, home care workers and their clients cannot reasonably be expected to care about each other. We endorse reforms aimed at enabling home care workers and their clients to form and maintain professional relationships that cultivate care.. (shrink)

Bioethics in the twenty‐first century is confronting what one might call “collective‐impact problems.” The ethics guidance and policies that are developed to address these kinds of problems will affect not only individuals but everyone living and future generations too. With many collective‐impact problems, all parties will eventually be worse off if there is a failure to develop solutions to head off damage to the shared environment. However, the effects are not felt equally throughout and across societies; some groups are hit (...) far worse. To address collective‐impact problems, bioethics needs to recalibrate. Our field, and especially American bioethics, should find a better balance between individual rights and the best interests of the group, develop more robust tools for examining structural inequities that damage people's health and well‐being, and study how to engage the public in learning about and shaping ethics guidance for these complex problems. (shrink)

War has major health consequences and poses significant ethical dilemmas for health professionals. In caring for victims of armed conflicts, health providers are obliged to put medical ethics before military aims. While the normative framework of warfare is clear and accepted by almost all countries, in practice, restrictions on violence are continuously broken, and the safety and independence of health professionals are not ensured. In bioethics, the issue of war has not been treated as a major concern. The field can (...) do more to articulate the responsibilities of health practitioners and scientists, arguing that Red Cross founder Henri Dunant's principle of humanity and the principles of professional and global ethics reject the idea of military necessity. Bioethics should focus on strategies to prevent war, encouraging the collective action of health professionals. Bioethics should also stress—as, so far, one national medical association has—that war is a man‐made public health problem. (shrink)

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)

Bioethicists frequently call for empirical researchers to engage participants and community members in their research, but don't themselves typically engage community members in their normative research. In this article, we describe an effort to include members of the public in normative discussions about the risks, potential benefits, and ethical responsibilities of social and behavioral genomics (SBG) research. We reflect on what might—and might not— be gained from engaging the public in normative scholarship and on lessons learned about public perspectives on (...) the risks and potential benefits of SBG research and the responsible conduct and communication of such research. We also provide procedural lessons for others in bioethics who are interested in engaging members of the public in their research. (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)

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)

Biomedical science suffered a loss of trust during the Covid‐19 pandemic. Why? One reason is a crisis fueled by confusion over the epistemology of science. Attacks on biomedical expertise rest on a mistaken view of what the justification is for crediting scientific information. The ideas that science is characterized by universal agreement and that any evolution or change of beliefs about facts and theories undermines trustworthiness in science are simply false. Biomedical science is trustworthy precisely because it is fallible, admits (...) error, adjusts to new information, and, most importantly, is practical. Successful diagnosis and cure demarcate the boundaries of warranted knowledge. The other reason is sociological. As the pandemic made all too clear, the loss of faith in scientific experts was due to the failure of most of them to engage in regular public dialogue, reflecting a failure to recognize the obligation that science has to bolster trust in its work and findings by concerted public engagement. (shrink)

Trust is a key component in delivering quality and respectful care within health care systems. However, a growing lack of confidence in health care, particularly among specific subgroups of the population in the United States, could further widen health disparities. In this essay, we explore one approach to building trust and reaching diverse communities to promote health: engaging community‐based organizations (CBOs) as trusted community messengers. We present case studies of partnerships in health promotion, community education, and outreach that showcase how (...) CBOs’ programs build and leverage trust in health care systems through their workforce, services, and engagement with the community. (shrink)

Building trust between academic medical centers and certain communities they depend on in the research process is hard, particularly when those communities consist of minoritized or historically marginalized populations. Some believe that engagement activities like the creation of advisory boards, town halls, or a research workforce that looks more like community members will establish or reestablish trust between academic medical centers and racialized communities. However, without systematic approaches to dismantle racism, those well‐intended actions become public performativity, and trust building will (...) fail. In this essay, we draw upon foundational ethical principles of trust, distrust, and trust building; apply the concept of bounded justice to performative trust acts; and center the works of Black and Indigenous feminist bioethicists to revisit some of the wisdom and valuable lessons they have contributed. Rebuilding trust is hard to do because people and institutions are often not honest about how hard it is and there is no simple box‐checking task that can disentangle our society's injustices, but there are steps to take in this direction. Individuals and institutions can recognize valuable relevant work that has already been written, partake in critical reflection, and then apply insights gained to take both small and sustainable steps toward transformational change and deeper trust. (shrink)

What were the impacts of the Covid‐19 pandemic on trust in public health information, and what can be done to rebuild trust in public health authorities? This essay synthesizes insights from science and technology studies, information studies, and bioethics to explore sociotechnical factors that may have contributed to the breakdown of trust in public health information during the Covid‐19 pandemic. The field of science and technology studies lays out the dynamic nature of facts, helping to explain rapid shifts in public (...) health messaging during Covid‐19 and reasons they produced a lack of trust in public health authorities. The information field looks at how facts are sociotechnically constructed through systems of classification, illustrating how extrascientific factors influence public health authorities. Putting these perspectives alongside bioethics principles raises additional factors to consider. The goal of this essay is to learn from past failures to point toward a brighter future where trust in public health authorities can be rebuilt, not on faith, but rather through striving for calibrated trust within which, through a virtuous circle, trust is validated. (shrink)

Prior research has documented how important it is to patients to be able to trust their physicians. In this essay, we introduce physician perspectives on the importance of earning patients’ trust. We conducted twelve semistructured interviews in late 2022, eleven with physicians and one with a patient‐experience expert. Physicians described earning patients’ trust as crucial for working effectively with patients, with several saying that it was as important as having medical knowledge. Physicians also expressed that feeling a patient trusting them (...) is professionally rewarding and fulfilling. To build trust with patients, physicians reported, they make the medical interaction all about the patient, express their belief in their patients, share their personal experiences, and use other strategies identified in previous literature: communicating effectively, being compassionate, and demonstrating competence. Physicians also reported experiencing challenges in building trust with patients, most often because of patients’ lack of trust in other levels of the health care system and because of having inadequate time to spend with patients. Additionally, Black and Brown physicians described how patients’ bias often blocks trust. (shrink)

Self‐trust is essential to the well‐being of people with chronic illnesses and those who care for them. In this exploratory essay, we draw on a trove of health narratives to catalyze examination of this important but often overlooked topic. We explore how self‐trust is impeded at both personal and structural levels, how it can best be nourished, and how it is related to self‐advocacy. Because people's ability to trust themselves is intrinsically linked to the trust others have in them, we (...) pay particular attention to the role that allies such as clinical professionals play in the development of self‐trust, highlighting the importance of eliciting patient narratives, of curious listening, and of compassionately raising questions. We also contrast the self‐trust paradigm with that of self‐management, which tends to replace the former's attention to patients’ experiences, abilities, qualities, or judgments with a professionally dominated discourse dedicated to addressing illness through behavior changes prescribed by clinicians. We close with a call to action, exhorting readers to focus on supporting self‐trust in health care settings and on creative research in this critical yet heretofore underrepresented domain. (shrink)

This essay analyzes two types of patient‐experience data to broaden and deepen understanding of trust in health care. Analysis of patients’ open‐ended comments shows a close connection between patients’ feelings of trust and their intent to recommend providers and provider organizations—a global measure to evaluate patients’ perceptions of care experiences. Patients’ comments also reveal the bidirectional building of trust between the patient and the caregiver. Trust gets built when patients perceive their caregivers to trust their knowledge of their bodies as (...) well as when caregivers demonstrate caring behaviors that earn the patients’ trust. Patients’ ratings of a closed‐ended survey item on “confidence in provider” create the greatest differentiation for the global measure of patient experience—whether patients did or did not recommend a practice or provider. The essay also discusses related findings on pre‐visit friction and the use of humor by the caregiver to expand understanding of trust. (shrink)

During times of crisis, institutions tend to focus on maintaining or restoring public trust, as well as on measures to insulate themselves (and their leadership) from potential legal liability. This is because institutions reflexively turn to lawyers, risk managers, crisis consultants, and public relations firms that focus on what they euphemistically call the “optics.” In this essay, I highlight the vital importance of addressing underlying reasons for an institution's loss of public trust—in particular, the loss (or erosion) of its integrity (...) and trustworthiness. Loss of public trust generates one kind of crisis—which I term “opsis.” But there is another kind of institutional crisis that so often remains unrecognized. Just as medical sepsis in the human body is a critical condition that endangers life, the loss of an institution's integrity and trustworthiness constitutes a type of sepsis—ethical sepsis—that poses an existential threat to the institution if unaddressed. (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)

Patient data is used to drive an ecosystem of advanced digital tools in health care, like predictive models or artificial intelligence‐based decision support. Patients themselves, however, receive little information about these technologies or how they affect their care. This raises important questions about patient trust and continued engagement in a health care system that extracts their data but does not treat them as key stakeholders. This essay explores these tensions and provides steps forward for health systems as they design advanced (...) health information‐technology (IT) policies and practices. It centers patients, their concerns, and the ways they perceive trustworthiness to reframe advanced health IT in service of patient interests. (shrink)

Health care and public health programs increasingly rely on, and often even require, organizational action, which is facilitated, if not dependent on, trust. Case examples in this essay highlight trust, trustworthiness, and distrust in public and private organizations, providing insights into how trust in health‐related organizations can be betrayed, earned, and justified and into the consequences of organizational trust and trustworthiness for the health of individuals and communities. These examples demonstrate the need for holistic assessments of trust in clinicians and (...) trust in organizations and for organizations, public health, and the medical profession to address questions concerning their own trustworthiness. Normative and empirical assessments of trust and trustworthiness that capture the experiences of those treated within the walls of a health care organization, as well as the care of those outside, will contribute to more trustworthy systems of care. (shrink)

The Covid‐19 pandemic highlighted the need to examine public trust in the U.S. Food and Drug Administration (FDA) vaccine approval process and the role of political influence in the FDA's decisions. Ensuring that the FDA is itself trustworthy is important for justifying public trust in its actions, like vaccine approvals, thereby promoting public health. We propose five conditions of trustworthiness that the FDA should meet when it reviews vaccines, even during emergencies: consistency with rules, proper expert or political decision‐makers, proper (...) decision‐making and noninterference, connection to public preference, and transparency of both reasons and procedures. The five conditions provide a road map of procedural and substantive requirements, which the FDA has variably implemented, focused on ensuring appropriate influence of political interests. While being a trustworthy agency cannot guarantee the public's trust, implementing these conditions builds a groundwork for public trust. (shrink)

In this essay, we explore consequences of the systemic failure to track and to publicize the prevalence of patient‐safety threats in American medicine. Tens of millions of Americans lose trust in medical care every year due to safety shortfalls. Because this loss of trust is long‐lasting, the corrosive effects build up over time, yielding a collective maelstrom of mistrust among the American public. Yet no one seems to notice that patient safety is a root cause, because no one is counting. (...) In addition to identifying the origins of this purblindness, we offer an alternative policy approach. This would call for government to transparently track safety threats through the systematic collection and reporting of patients’ experiences. This alternative strategy offers real promise for stemming the erosion of trust that currently accompanies patient‐safety shortfalls while staying consistent with Americans’ preferences for a constrained government role with respect to medical care. (shrink)

Collaboration between the arts and health sectors is gaining momentum. Artists are contributing significantly to public health efforts such as vaccine confidence campaigns. Artists and the arts are well positioned to contribute to the social conditions needed to build trust in the health sector. Health professionals, organizations, and institutions should recognize not only the power that can be derived from the insights, artefacts, and expertise of artists and the arts to create the conditions that make trust possible. The health sector (...) must also recognize that, while it can gain much from partnership with artists, artists risk much—namely, the public's trust—when they are in such partnerships. This essay unpacks these claims and considers the care and ethical considerations that must be brought to these partnerships to yield constructive pathways for ethical collaboration as well as for both establishing public trust and continuing to hold the health care profession accountable for becoming more trustworthy. (shrink)

Trust in medicine is often conceived of on an individual level, with respect to how people rely on particular clinicians or institutions. Yet as discussions of trust during the Covid‐19 pandemic highlighted, trust decisions are not always as individual or interpersonal as this conception suggests. Rather, individual instances of trusting behavior are related to social trust, which is conceived as a willingness to be vulnerable to people in general, based on a sense of shared norms. In this essay, I propose (...) that individual and social trust are connected to each other in what can be termed a “climate of trust.” I explain how masking trends during the pandemic facilitated a “climate of distrust,” and I consider the role that clinicians might play in transforming climates of distrust into climates of trust. (shrink)

This essay summarizes key insights across the essays in the Hastings Center Report's special report “Time to Rebuild: Essays on Trust in Health Care and Science.” These insights concern trust and trustworthiness as distinct concepts, competence as a necessary but not sufficient input to trust, trust as a reciprocal good, trust as an interpersonal as well as structural phenomena, the ethical impermissibility of seeking to win trust without being trustworthy, building and borrowing trust as distinct strategies, and challenges to trustworthiness (...) posed by the contingent nature of science. Together, these insights stand to advance an area of research that we believe has been historically stymied by conceptual confusion and a long‐standing insistence on treating trust as a purely instrumental good. (shrink)