The privacy of the dead is an interesting area of concern for bioethicists. There is a legal doctrine that the dead can't have privacy rights, but also a body of contrary law ascribing privacy rights to the deceased and kin in relation to the deceased. As women's abortion privacy is under assault by American courts and legislatures, the implications of ascribing privacy rights to embryos and fetuses is more important than ever. Caution is called for in this domain.

What ethically justifies the provision of invasive and irreversible treatments to minors? In this commentary, I examine this question in response to Moti Gorin's article “What Is the Aim of Pediatric ‘Gender‐Affirming’ Care?,” which critiques autonomy‐based arguments for justification of gender‐affirming care in minors. Minors generally lack sufficient autonomy to make significant medical decisions or major life decisions. For this reason, parents are generally their decision‐makers, working with medical professionals to choose treatments that serve the best interests of the minor. (...) Medical care in minors is justified by beneficence, not autonomy, and this should be no different for gender‐affirming care. This severely undermines autonomy‐based arguments for provision of gender‐affirming care to minors. Given the lack of conclusive evidence for benefit, the nature of the treatment, and the fact that gender dysphoria in minors resolves spontaneously in most cases, there is presently insufficient justification for provision of such care to minors. (shrink)

This commentary responds to Moti Gorin's article “What Is the Aim of Pediatric ‘Gender‐Affirming’ Care?” We argue that Gorin's case against pediatric gender‐affirming care rests upon numerous false conceptual binaries: female/male, public/private, objective/subjective, and medically necessary/elective. Drawing on feminist bioethics, we show how such dichotomous thinking is both inaccurate and marginalizing of gender minorities.

This letter responds to the essay “Digital Humans to Combat Loneliness and Social Isolation: Ethics Concerns and Policy Recommendation,” by Nancy S. Jecker, Robert Sparrow, Zohar Lederman, and Anita Ho, in the January‐February 2024 issue of the Hastings Center Report.

In 1997, when Oregon became the first U.S. jurisdiction authorizing medical aid in dying (MAID), its law included a requirement that patients be legal residents of the state. Other U.S. jurisdictions legalizing MAID followed Oregon in adopting residency requirements. Recent litigation challenges the legality, as well as the justification, for such requirements. Facing such challenges, Oregon and Vermont eliminated their MAID residency requirements. More states could follow this move, for, in certain circumstances, the U.S. Constitution's privileges and immunities clause protects (...) citizens’ right to travel to secure medical care. Policy considerations could also motivate states to reexamine whether such requirements are justified in light of existing evidence of how MAID laws have been applied. (shrink)

The work of bioethicists often involves identifying an ethical problem in health or medicine and proposing a policy to address it. But the path to policy is full of twists and turns, bumps and detours. Effecting policy may be the goal, but it is far from assured. One success story is discussed here. The U.S. Department of Health and Human Services issued a ruling in April 2024 that requires all teaching hospitals in the country to get written consent from patients (...) before they undergo intimate medical exams. The ruling was informed by an essay in the Hastings Center Report two years ago that revealed that millions of U.S. residents have received unconsented intimate exams and that this unethical practice occurs nearly four times as often in Black patients as White patients. (shrink)

The original “Dutch Protocol”—the treatment model comprised of puberty blockers, cross‐sex hormones, and surgery—was intended to improve the mental and physical health of pediatric patients experiencing distress over their sexed bodies. Consequently, both researchers and clinicians have couched eligibility for treatment and measures of treatment efficacy in terms of the interventions’ effects on outcomes such as gender dysphoria, depression, anxiety, and suicide. However, recent systematic reviews have concluded that the scientific evidence supporting these interventions is uncertain, leading to significant international (...) differences in what treatments are offered to youth. Against this backdrop, a different argumentative approach has emerged in support of gender‐affirming care. This approach appeals not to reductions in patient morbidity or mortality but to patient autonomy, where medical intervention is pursued as a means to the satisfaction of a patient's “embodiment goals.” In this article, I raise objections to autonomy‐based justifications for pediatric gender‐affirming care, concluding that these arguments misunderstand the place of autonomy in clinical decision‐making and, consequently, put patients at risk of medical harm. (shrink)

This letter responds to the article “What Do Prospective Parents Owe to Their Children?,” by Abigail Levin, in the March‐April 2024 issue of the Hastings Center Report.

This letter replies to the letter “Colonial and Neocolonial Barriers to Companion Digital Humans in Africa,” by Luís Cordeiro‐Rodrigues, in the same, May‐June 2024, issue of the Hastings Center Report.

This commentary responds to the article “What Is the Aim of Pediatric ‘Gender‐Affirming’ Care?,” by Moti Gorin, in the same issue of the journal. Gender‐affirming care is often treated as exceptional and subject to heightened scrutiny. This exceptionalization results in its being held to stricter evidentiary standards than other forms of medical interventions are. But values and value judgments are inextricable from the practice of evidence‐based medicine. For gender‐affirming care, values shape what counts as “strong” evidence, whether the legitimacy of (...) transgender identity is assumed versus treated as something to be investigated, how to characterize the testimonial accounts of trans and gender‐nonconforming patients, and more. We argue that these kinds of questions are part of the practice of medicine, not exceptional to transgender people and gender‐affirming care. However, litigation of evidence for gender‐affirming care in state and national policy underscores the moral urgency of thinking carefully about what values ought to guide evidence. (shrink)

New anti‐obesity medications (AOMs) have received widespread acclaim in medical journals and the media, but they also raise critical ethical, public health, and public policy concerns that have largely been ignored. AOMs are very costly, need to be taken by a patient in perpetuity (since significant rebound weight gain otherwise occurs), and threaten to shift resources and focus away from other crucial efforts at obesity treatment and prevention. Many people may feel less motivated to exercise or reduce their caloric consumption, (...) if they assume that obesity is now medically treatable. Policy‐makers may similarly come to feel that the solution to the obesity pandemic is simply to prescribe medications and that prevention efforts are far less necessary. These drugs raise concerns about justice (since AOMs will disproportionately benefit the wealthy), medicalization, and marketing. Policy‐makers, clinicians, and others need to engage in multipronged educational and policy efforts to address these challenges. (shrink)

This letter responds to the letter “The Open Donor View and Procreative Beneficence,” by Daniel Groll, in the same, May‐June 2024, issue of the Hastings Center Report.

Since the U.S. Supreme Court's decision in Dobbs vs. Jackson Women's Health Organization, a growing web of state laws restricts access to abortion. Here we consider how, ethically, doctors should respond when terminating a pregnancy is clinically indicated but state law imposes restrictions on doing so. We offer a typology of cases in which the dilemma emerges and a brief sketch of the current state of legal prohibitions against providing such care. We examine the issue from the standpoints of conscience, (...) professional ethics, and civil disobedience and conclude that it is almost always morally permissible and praiseworthy to break the law and that, in a subset of cases, it is morally obligatory to do so. We further argue that health care institutions that employ or credential physicians to provide reproductive health care have an ethical duty to provide a basic suite of practical supports for them as they work to ethically resolve the dilemmas before them. (shrink)

For more than sixty years, surgeons have used bioethical strategies to promote patient self‐determination, many of these now collectively described as “informed consent.” Yet the core framework—understanding, risks, benefits, and alternatives—fails to support patients in deliberation about treatment. We find that surgeons translate this framework into an overly complicated technical explanation of disease and treatment and an overly simplified narrative that surgery will “fix” the problem. They omit critical information about the goals and downsides of surgery and present untenable options (...) as a matter of patient choice. We propose a novel framework called “better conversations.” Herein, surgeons provide context about clinical norms, establish the goals of surgery, and comprehensively delineate the downsides of surgery to generate a deliberative space for patients to consider whether surgery is right for them. This paradigm shift meets the standards for informed consent, supports deliberation, and allows patients to anticipate and prepare for the experience of treatment. (shrink)

In 1971, two years before Roe v. Wade affirmed federal protection for abortion, Judith Jarvis Thomson attempted to demonstrate the wrongs of forced gestation through analogy: you awake to find that the world's most esteemed violinist is wholly, physically dependent on you for life support. Here, the authors suggest that Thomson's intuition, that there is a relevant similarity between providing living kidney support and forced gestation, is realized in the contemporary practice of living organ donation. After detailing the robust analogy (...) between living kidney donation and gestation, we turn to current ethical guidelines incorporated in the United Network for Organ Sharing's requirements for legally authorized organ donation and transplantation. We conclude that if, as we—and Thomson—suggest, organ donation and gestation are relevantly similar, then the ethical framework supporting donation may aid in articulating ethical grounds that will be compelling in informing the legal grounds for a defense of abortion. (shrink)

Amidst the misinformation climate about trans people and their health care that dominates policy and social discourse, autonomy‐based rationales for gender‐affirming care for trans and nonbinary youth are being called into question. In this commentary, which responds to “What Is the Aim of Pediatric ‘Gender‐Affirming’ Care?,” by Moti Gorin, we contextualize the virulent ideas circulating in misinformation campaigns that have become weaponized for unprecedented legal interference into standard health care. We conclude that the current legal justifications for upending gender‐affirming care (...) gloss over how this health care field meets conventional evidentiary standards and aligns protocols with most other fields of medicine. Refusal to offer gender‐affirming care is more harmful than centralizing trans and nonbinary people's health autonomy. (shrink)

Although considerable attention has been devoted to the concepts of “visible” and “invisible” victims in general medical practice, especially in relation to resource allocation, far less consideration has been devoted to these concepts in behavioral health. Distinctive features of mental health care in the United States help explain this gap. This essay explores three specific ways in which the American mental health care system protects potentially “visible” individuals at the expense of “invisible victims” and otherwise fails to meet the needs (...) of great numbers of people with serious psychiatric conditions: prioritization of the wrong patients, incentivization of excessive caution among providers, and a narrow definition of psychiatry's purview. While each of these practices has been discussed elsewhere in the literature, they are rarely considered as part of an interrelated and systemic problem. Reconceptualizing these three issues as aspects of the larger conflict between the interests of “visible” and “invisible” victims may prove a path toward reform. (shrink)

This letter responds to the essay “Securing the Trustworthiness of the FDA to Build Public Trust in Vaccines,” by Leah Z. Rand, Daniel P. Carpenter, Aaron S. Kesselheim, Anushka Bhaskar, Jonathan J. Darrow, and William B. Feldman, in the special report “Time to Rebuild: Essays on Trust in Health Care and Science,” in the September‐October 2023 issue of the Hastings Center Report.

In response to the increasing number of mentally ill people experiencing homelessness, some policy‐makers have called for the expanded use of involuntary commitment, even for individuals who are not engaging in behaviors that are immediately life‐threatening. Yet there is no evidence that involuntary commitment offers long‐term benefits, and significant reasons to believe that expanding the practice will cause harm. In addition, these proposals ignore research showing that most people with mental illness have the capacity to make medical decisions for themselves. (...) Rather than expanding the use of involuntary commitment, policy‐makers should support approaches proven to decrease the prevalence of homelessness, such as supportive housing. In addition, states should reevaluate their commitment standards for persons who pose no risk of harm to others. One promising approach is Northern Ireland's Mental Health Capacity Act of 2016, which establishes a uniform standard for imposing nonconsensual health care interventions, without any distinction between mental illnesses and other conditions in which capacity might be compromised. (shrink)

I consider the question of what moral obligations prospective parents owe to their future children. It is taken as an almost axiomatic premise of a wide range of philosophical arguments that prospective parents have a moral obligation to take such steps as ensuring their own financial stability or waiting until they are emotionally mature before conceiving. This is because it is assumed that parents have a moral obligation to lay the groundwork for their children's lives to go well. While at (...) first glance such a premise seems benign, I will argue that when it is applied to arguments in assisted reproductive technology, as it is in Julian Savulescu's procreative beneficence argument or as it is in Daniel Groll's recent argument for open gamete donation, we see problems with this premise. Problems in Groll's argument also become apparent when it is scrutinized in connection with this premise. (shrink)

Although the field of surgical ethics focuses primarily on informed consent, surgical decision‐making, and research ethics, some surgeons have started to consider ethical questions regarding justice and solidarity with poor and minoritized populations. To date, those calling for social justice in surgical care have emphasized increased diversity within the ranks of the surgical profession. This article, in contrast, foregrounds the agency of those most affected by injustice by bringing to bear an ethic of accompaniment. The ethic of accompaniment is born (...) from a theological tradition that has motivated work to improve health outcomes in those at the margins through its emphasis on listening, solidarity against systemic drivers of disease, and proximity to individuals and communities. Through a review of surgical ethics and exploration of a central patient case, we argue for applying an ethic of accompaniment to the care of surgical patients and their communities. (shrink)

The authors respond to a letter by Mitchell Berger in the March‐April 2024 issue of the Hastings Center Report concerning their essay “Securing the Trustworthiness of the FDA to Build Public Trust in Vaccines.”.

The standard of care in the United States favors stabilizing any adult who arrives in an emergency department after a failed suicide attempt, even if he appears decisionally capacitated and refuses life‐sustaining treatment. I challenge this ubiquitous practice. Emergency clinicians generally have a moral obligation to err on the side of stabilizing even suicide attempters who refuse such interventions. This obligation reflects the fact that it is typically infeasible to determine these patients’ level of decisional capacitation—among other relevant information—in this (...) unique setting. Nevertheless, I argue, stabilizing suicide attempters over their objection sometimes violates a basic yet insufficiently appreciated right of theirs—the right against bodily invasion. In such cases, it is at least prima facie wrong to stabilize a patient who wants to die even if they lack a contrary advance directive or medical order and suffer from no terminal physical illness. (shrink)

On September 1, 2023, Texas made important revisions to it its decades‐old statute granting legal safe harbor immunity to physicians who withhold or withdraw life‐sustaining treatment over the objection of critically ill patients’ surrogate decision‐makers. However, lawmakers left untouched glaring flaws in a key safeguard for patients—the transfer option. The transfer option is ethically important because, when no hospital is willing to accept the patient in transfer, that fact is taken as strong evidence that the surrogates’ treatment requests fall outside (...) accepted medical practice. But there are serious shortcomings in how the transfer option is carried out in Texas and many other states, which undermines the ethical usefulness of the process. We identify these shortcomings and recommend revisions to state statutes and professional guidelines to overcome them. (shrink)

Strategies to address misinformation and hesitancy about vaccines, including the fear of needles, and to overcome obstacles to access, such as the refrigeration that some vaccines demand, strongly suggest the need to develop new vaccine delivery technologies. But, given widespread distrust surrounding vaccination, these new technologies must be introduced to the public with the utmost transparency, care, and community involvement. Two emerging technologies, one a skin‐patch vaccine and the other a companion dye and detector, provide excellent examples of greatly improved (...) delivery technologies for which such a careful approach should be developed in order to increase vaccine uptake. Defusing fears and conspiracy mongering must be a key part of their rollout. (shrink)

Data infrastructure includes the bureaucratic, technical, and social mechanisms that assist in actions like data management, analysis, storage, and sharing. While issues like data sharing have been addressed in depth in bioethical literature, data infrastructure presents its own ethical considerations, apart from the actions (such as data sharing and data analysis) that it enables. This essay outlines some of these considerations—namely, the ethics of efficiency, the visibility of infrastructure, the power of standards, and the impact of new technologies—in order to (...) invite the bioethics community to participate in conversations about infrastructure, as their expertise is both needed and welcomed. (shrink)

Advancing neuroscience is one of many topics that pose a challenge often called “the alignment problem”—the challenge, that is, of assuring that science policy is responsive to and in some sense squares with the public's values. This issue of the Hastings Center Report launches a series of scholarly essays and articles on the ethical and social issues raised by this vast body of medical research and bench science. The series, which will run under the banner “Neuroscience and Society,” is supported (...) by the Dana Foundation and seeks to promote deliberative public engagement, broadly understood, about neuroscience. As a social goal, deliberative public engagement is both ubiquitous and elusive—called for everywhere yet difficult to undertake at a national level on a complex scientific topic. To be meaningful, deliberative public engagement must occur in many locations in a society and be carried forward by many actors. Scholarly writing might contribute in several ways. (shrink)

Patient narratives from two investigational deep brain stimulation trials for traumatic brain injury and obsessive‐compulsive disorder reveal that injury and illness rob individuals of personal identity and that neuromodulation can restore it. The early success of these interventions makes a compelling case for continued post‐trial access to these technologies. Given the centrality of personal identity to respect for persons, a failure to provide continued access can be understood to represent a metaphorical identity theft. Such a loss recapitulates the pain of (...) an individual's initial injury or illness and becomes especially tragic because it could be prevented by robust policy. A failure to fulfill this normative obligation constitutes a breach of disability law, which would view post‐trial access as a means to achieve social reintegration through this neurotechnological accommodation. (shrink)

We argue that in implanted neurotechnology research, participants and researchers experience what Henry Richardson has called “moral entanglement.” Participants partially entrust researchers with access to their brains and thus to information that would otherwise be private, leading to created intimacies and special obligations of beneficence for researchers and research funding agencies. One of these obligations, we argue, is about continued access to beneficial technology once a trial ends. We make the case for moral entanglement in this context through exploration of (...) participants’ vulnerability, uncompensated risks and burdens, depth of relationship with the research team, and dependence on researchers in implanted neurotechnology trials. (shrink)

Social isolation and loneliness are growing concerns around the globe that put people at increased risk of disease and early death. One much‐touted approach to addressing them is deploying artificially intelligent agents to serve as companions for socially isolated and lonely people. Focusing on digital humans, we consider evidence and ethical arguments for and against this approach. We set forth and defend public health policies that respond to concerns about replacing humans, establishing inferior relationships, algorithmic bias, distributive justice, and data (...) privacy. (shrink)

State prescription drug monitoring programs (PDMPs) use proprietary, predictive software platforms that deploy algorithms to determine whether a patient is at risk for drug misuse, drug diversion, doctor shopping, or substance use disorder (SUD). Clinical overreliance on PDMP algorithm‐generated information and risk scores motivates clinicians to refuse to treat—or to inappropriately treat—vulnerable people based on actual, perceived, or past SUDs, chronic pain conditions, or other disabilities. This essay provides a framework for challenging PDMP algorithmic discrimination as disability discrimination under federal (...) antidiscrimination laws, including a new proposed rule interpreting section 1557 of the Affordable Care Act. (shrink)

Imprisonment may sometimes be a justified form of punishment. Yet the U.S. carceral system suffers from appalling problems of justice—in who is put into prisons, in how imprisoned people are treated, and in downstream personal and community health impacts. Medical personnel working in prisons and jails take on risky work for highly vulnerable and underserved patients. They are to be lauded for their professional commitments. Yet at the same time, prison care undercuts the ability of medical personnel to uphold their (...) own professional standards and sometimes fails in even basic health protection. Doctors in prisons are stuck between their commitment to vulnerable patients and complicity in a system that requires their participation to uphold its constitutionality. Medical ethics is frayed in prisons, and the problem deserves our attention. (shrink)

This essay looks closely at metaphors and other figures of speech that often feature in how Americans talk about dementia, becoming part of cultural narratives: shared stories that convey ideas and values, and also worries and fears. It uses approaches from literary studies to analyze how cultural narratives about dementia may surface in conversations with family members or health care professionals. This essay also draws on research on a notable social effect of legalizing medical aid in dying: patients may find (...) it easier to bring up a range of concerns, regardless of whether they have any interest in hastening their own death. The essay proposes that health care professionals rethink an idea prominent within their own culture: that conversations about the end of a person's life are inherently difficult. This framing may make it hard for people facing dementia to bring up their concerns about what lies ahead. We suggest a different way to think about these conversations, using the metaphor of “opening the door” to represent inviting a patient to bring up issues of deepest concern. (shrink)

Cultural narratives shape how we think about the world, including how we decide when the end of life begins. Hospice care has become an integral part of the end‐of‐life care in the United States, but as it has grown, its policies and practices have also imposed cultural narratives, like those associated with the “six‐month rule” that the majority of the end of life takes place in the final six months of life. This idea is embedded in policies for a range (...) of care practices and reimbursement processes, even though six months is not always a meaningful marker. In the case of people living with advanced dementia, six months is both too early in the trajectory to facilitate conversations and too late in the trajectory to ensure decision‐making capacity. This essay encourages scholars and policy‐makers to consider how cultural narratives may limit what they think is possible in care for people living with dementia. (shrink)

Taking steps to build a more dementia‐friendly society is essential for addressing the needs of people experiencing dementia. Initiatives that improve the quality of life for those living with dementia are needed to lessen controllable factors that can negatively influence how people envision a future trajectory of dementia for themselves. Programs that provide better funding and better coordination for care support would lessen caregiver burden and make it more possible to imagine more people being able to live what they might (...) consider a “good life” with dementia. Specific proposals, such as payment for dementia care managers and new systems to support high‐quality, symptom‐based palliative care beyond the hospice benefit of only six months, would improve and reframe how many people in the United States experience a dementia illness. Such changes should be incorporated into discussions about improving and respecting preferences in the later stages of dementia. (shrink)

When people lose capacity to make a medical decision, the standard is to assess what their preferences would have been and try to honor their wishes. Dementia raises a special case in such situations, given its long, progressive trajectory during which others must make substituted judgments. The question of how to help surrogates make better‐informed decisions has led to the development of dementia‐specific advance directives, in which people are given tools to help them communicate what their preferences are while they (...) are still able. Such directives allow the perspective of the person to play a clearer role in guiding decisions about their care. Dementia directives can never serve as rigid algorithms. Rather, they can be used to help inform conversations, to help surrogates make decisions that are better aligned with the preferences the person would have had. This essay lays out the proposed utility of dementia‐specific directives and addresses some of the criticisms raised about them. (shrink)

Some individuals facing dementia contemplate hastening their own death: weighing the possibility of living longer with dementia against the alternative of dying sooner but avoiding the later stages of cognitive and functional impairment. This weighing resonates with an ethical and legal consensus in the United States that individuals can voluntarily choose to forgo life‐sustaining interventions and also that medical professionals can support these choices even when they will result in an earlier death. For these reasons, whether and how a terminally (...) ill individual can choose to control the timing of their death is a topic that cannot be avoided when considering the dementia trajectory. With a focus on the U.S. context, this landscape review considers the status of provisions that would legally permit people facing dementia to hasten death with appropriate support from medical professionals. This review can be used to plan and guide clinical and legal practitioner discussion and policy development concerning evolving questions not fully covered by existing medical decision‐making provisions. (shrink)