The laws of medical malpractice have historically differed in significant ways from general liability laws. Until the mid‐twentieth century, physician liability in the United States was limited to cases in which the doctor and patient had an established professional relationship. In the 1970s, courts and legislatures began carving out exceptions when patients posed an imminent threat to identifiable third parties. Recently, a series of cases involving circumstances such as curbside consultation, threats of violence, and automotive accidents have led some state (...) courts to abandon the requirement of a preexisting physician‐patient relationship. Instead, the courts now focus on whether foreseeable reliance is present. While these developments may significantly impact clinical practice, the connections between these cases have gone largely overlooked by both the medical and bioethics communities. This essay aims to highlight these parallel developments and to suggest that this evolution reflects a broader trend with implications far beyond the individual cases themselves. (shrink)

Since 2020, physician associations have become more vocal about confronting racism, initiating a wide range of advocacy efforts, making programming changes, and issuing public statements on the topic. However, associations have directed their enthusiasm about addressing racism toward an overly broad range of statements, initiatives, and legislative advocacy. In this essay, we provide some guidance regarding which race‐based actions are best suited for physicians’ professional associations. We describe traits of three types of physician associations in the United States—state, specialty, and (...) affinity—highlighting characteristics of each and discussing their strengths and weaknesses regarding different types of action around racism. It is our hope that we might direct concerned physicians toward initiatives that draw upon association strengths and that can serve as the basis for association‐specific advocacy niches—and away from initiatives that enable associations to signal that they are engaged in racial‐equity work without accountability or efficacy. (shrink)

Alcohol is a class 1 carcinogen, and its use, at any level, is not safe for health. Despite this, alcohol remains strongly mixed into medical culture and is often served free at medical‐community events. This presents numerous ethical concerns. First, the funding of alcohol‐centered events by the medical community reinforces alcohol consumption as a coping mechanism for stress, perpetuates the perceived need for alcohol for socialization, and falsely implies that it is a safe substance. Additionally, the medical community is increasingly (...) diverse, including Muslims, Mormons, those in recovery from substance use disorders, pregnant individuals, and individuals from homes and communities damaged by alcohol. Due to their moral or safety concerns, these individuals may miss opportunities to network and engage in professional development when alcohol is present. Therefore, alcohol acts as a barrier to diversity, equity, and inclusion efforts and can result in pernicious downstream effects for minority patient populations. (shrink)

What makes certain scientific research controversial? And when does scientific research go beyond being merely controversial to be something far worse? We propose a diagnostic framework for distinguishing between scientific research that is merely controversial and that which is abhorrent. Our framework places research projects along two axes of a value‐harm map. Most research, fortunately, is both valuable and harmless. However, research may be controversial if it is either valuable but harmful or harmless but valueless. The most concerning quadrant of (...) our value‐harm map includes research that is both valueless and harmful, which is abhorrent science. The article's analysis considers a series of case studies, highlighting “new genomic race science” as an exemplar of abhorrent science. (shrink)

Many of us in the modern world find ourselves implicated in massive, structural harms and injustices. We emit greenhouse gases, which—along with everyone else's emissions—are warming the planet. We buy products that result from bad labor practices. And many of us feel (appropriately, I think) some amount of guilt for our participation, but also find it difficult or impossible to fully extract ourselves from the problematic systems. I call this challenge of determining individual moral responsibility in the face of massive, (...) structural problems “catastrophe ethics.” In this Perspective commentary, I suggest that the ubiquity of catastrophe ethics cases in the modern world justifies adopting a position of moral humility, as we recognize that none of us is morally pure but, rather, we are each choosing our own version of impurity. (shrink)

This letter responds to the essay “Language Matters: The Semantics and Politics of ‘Assisted Dying,’” by Anna M. Elsner, Charlotte E. Frank, Marc Keller, Jordan O. McCullough, and Vanessa Rampton, in the September‐October 2024 issue of the Hastings Center Report.

I present a bipartite model of organ stewardship that places it at the intersection of resource stewardship and gift stewardship. Though both forms of stewardship are grounded in relationships of trust, they are importantly distinct, as are the duties they confer. This bipartite model of organ stewardship functions as a beneficial instrument for understanding and resolving conflicts among transplant stakeholders. As proof of concept, I apply the bipartite model of organ stewardship to a controversial case of conditional organ donation, showing (...) that we can better understand the underlying moral conflict if we recognize that it involves a tension between resource and gift stewardship. Then, demonstrating that the model can do more than just explanatory work, I use it to resolve the long‐standing debate over whether organ transplant recipients are organ stewards. Although some transplant recipients are gift stewards, I argue, none are resource stewards, and they therefore do not owe anything to members of the transplant team. (shrink)

In The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No, bioethicist Carl Elliot seeks to understand people who blow the whistle on unethical human research projects. The book compares whistleblowers in six scandals, and Elliot's main explanation for why someone becomes a whistleblower is personal honor. Exploring what led to or might have prevented these scandals, Elliot is critical of institutional review boards, and he links research ethics violations to injustices in everyday clinical care and medical training (...) and to power imbalances in medical institutions. Some of the clinical and scientific details in the cases suggest other moral and ethical problems and the increasing irrelevance of the practice-research distinction. Whistleblowers are also needed for the mass experiments that occur when practices diffuse without robust evidence and for the structural inequalities on which American clinical care, teaching, and research depend. (shrink)

This letter responds to a letter by Moti Gorin in the same issue, September‐October 2024, of the Hastings Center Report.

Combativeness is a social illness. We are surrounded by culture wars over abortion, vaccine mandates, transgender care, how we die, and even how we define death. The problem is not that we disagree, but how we disagree: too often, with anger, aggression, and a sense of urgency to win against the other. Bioethicists have the knowledge and skills needed to model constructive disagreement and respectful calls for change. Bioethicists may have increased awareness that everyone suffers from unconscious self‐serving biases—we are (...) all imperfect. They are trained to recognize competing values and to engage in processes of balancing values in social contexts. Clinical ethicists are additionally trained in mediation, which involves acknowledging goodwill, listening deeply, apologizing when needed, and seeking common ground. In short, bioethicists have many of the tools needed to be healers of a culture afflicted with combativeness. (shrink)

This essay examines the impact of linguistic choices on the perception and regulation of assisted dying, particularly in Canada. It argues that euphemistic terms like “medical assistance in dying” and its acronym, “MAID,” serve to normalize the practice, potentially obscuring its moral gravity. This contrasts with what is seen in Belgium and the Netherlands, where terms like “euthanasia” are used, as well as in France and the United Kingdom, where terminology remains divisive and contested. By tracing the evolution of these (...) terms and what they reveal about different cultural and legal approaches, this essay sheds light on the politics of language in end-of-life discourses. It suggests that the shift toward euphemistic language reflects a broader discomfort with death that can shape public attitudes and legal frameworks. It calls for a more transparent, philosophically grounded approach to terminology and suggests that continued debate about semantics is necessary to capture the complexities and ethical significance of assisted dying. (shrink)

This letter responds to the Other Voices commentaries “Troubling Trends in Health Misinformation Related to Gender-Affirming Care,” by Stef M. Shuster and Meredithe McNamara; “Values and Evidence in Gender-Affirming Care,” by Os Keyes and Elizabeth Dietz; “Breaking Binaries: The Critical Need for Feminist Bioethics in Pediatric Gender-Affirming Care,” by Lisa Campo-Engelstein, Grayson Jackson, and Jacob Moses; and “Minors Lack the Autonomy to Consent to Gender-Affirming Care: Best Interests Must Be Primary,” by John C. Bester, in the May-June 2024 issue of (...) the Hastings Center Report. (shrink)

While somatic cell editing to treat disease is widely accepted, the use of human genome editing for “enhancement” remains contested. Scientists and policy-makers routinely cite the prospect of enhancement as a salient ethical challenge for human genome editing research. If preventive genome editing projects are perceived as pursuing human enhancement, they could face heightened barriers to scientific, public, and regulatory approval. This article outlines what we call “preventive strengthening research” (or “PSR”) to explore, through this example, how working to strengthen (...) individuals’ resistance to disease beyond what biomedicine considers to be the human functional range may be interpreted as pursuing human enhancement. Those involved in developing guidance for PSR will need to navigate the interface between preventive goals and enhancement implications. This article identifies and critiques three of these ideas in the interest of anticipating the wider emergence of PSR and the need for a normative approach for its pursuit. All three “candidate criteria” merit attention, but each also faces challenges that will need to be addressed as further research policy is developed. (shrink)

In “Neither Ethical nor Prudent: Why Not to Choose Normothermic Regional Perfusion” Omelianchuk and colleagues offer an exceptionally clear and methodical critique of the ethical and legal permissibility of in situ normothermic regional perfusion (NRP). NRP involves, in part, the reperfusion of organs via extracorporeal membrane oxygenation (ECMO) after a declaration of death and the occlusion of the arteries supplying blood to the brain. The authors’ main conclusion is that NRP invalidates the declaration of death via the standards set by (...) the Uniform Determination of Death Act (which requires either permanent cessation of circulatory and respiratory functions or irreversible cessation of all brain functions for a determination of death) and thereby violates the Dead Donor Rule (DDR) (which, minimally, requires that organ recovery not be the cause of death). Their arguments for these points, however, are flawed. Most notably, this conclusion rests on mistaken assumptions about the role of circulation in both the UDDA and DDR. A close examination of the role of circulation in sustaining life shows that NRP is consistent with both the UDDA and the DDR. (shrink)

This letter responds to the article “Neither Ethical nor Prudent: Why Not to Choose Normothermic Regional Perfusion,” by Adam Omelianchuk et al., in the July‐August 2024 issue of the Hastings Center Report.

This letter responds to letters by Garson Leder and by Harrison Lee in the same issue, September‐October 2024, of the Hastings Center Report.

This letter responds to a letter by Moti Gorin in the same issue, September‐October 2024, of the Hastings Center Report.

Researchers and practitioners are increasingly using machine‐generated synthetic data as a tool for advancing health science and practice, by expanding access to health data while—potentially—mitigating privacy and related ethical concerns around data sharing. While using synthetic data in this way holds promise, we argue that it also raises significant ethical, legal, and policy concerns, including persistent privacy and security problems, accuracy and reliability issues, worries about fairness and bias, and new regulatory challenges. The virtue of synthetic data is often understood (...) to be its detachment from the data subjects whose measurement data is used to generate it. However, we argue that addressing the ethical issues synthetic data raises might require bringing data subjects back into the picture, finding ways that researchers and data subjects can be more meaningfully engaged in the construction and evaluation of datasets and in the creation of institutional safeguards that promote responsible use. (shrink)

Researchers and practitioners are increasingly using machine-generated synthetic data as a tool for advancing health science and practice, by expanding access to health data while—potentially—mitigating privacy and related ethical concerns around data sharing. While using synthetic data in this way holds promise, we argue that it also raises significant ethical, legal, and policy concerns, including persistent privacy and security problems, accuracy and reliability issues, worries about fairness and bias, and new regulatory challenges. The virtue of synthetic data is often understood (...) to be its detachment from the data subjects whose measurement data is used to generate it. However, we argue that addressing the ethical issues synthetic data raises might require bringing data subjects back into the picture, finding ways that researchers and data subjects can be more meaningfully engaged in the construction and evaluation of datasets and in the creation of institutional safeguards that promote responsible use. (shrink)

In light of the proposed expansion of eligibility for physician aid in dying (PAD) in Canada to people with psychiatric disorders, there is a new subset of individuals seeking PAD—those with poverty-induced depression. The dominant account defending the expansion is known as the “parity argument.” Defenders of the parity argument maintain that the expansion of PAD to those with psychiatric conditions is needed to reflect that the seriousness of a patient's suffering does not depend on the cause of that suffering. (...) Parity accounts, as they stand, would allow cases of poverty-induced depression to qualify. I raise a moral dilemma that the parity theorist must face considering this new subset of cases—expanding access to PAD, without adequate social protections, could produce more social inequality by aiming to reduce it. I propose six recommendations that policy-makers should consider before expanding PAD given these cases, social injustice, and the social determinants of mental health. (shrink)

This letter responds to the article “Beneath the Sword of Damocles: Moral Obligations of Physicians in a Post-Dobbs Landscape,” by Anne Drapkin Lyerly, Ruth R. Faden, and Michelle M. Mello, in the May-June 2024 issue of the Hastings Center Report.

Abstract“Conscientious provision” refers to situations in which clinicians wish to provide legal and professionally accepted treatments prohibited within their (usually Catholic) health care institutions. It mirrors “conscientious objection,” which refers to situations in which clinicians refuse to provide legal and professionally accepted treatments offered within their (usually secular) health care institutions. Conscientious provision is not protected by law, but conscientious objection is. In practice, this asymmetry privileges conservative religious or moral values (usually associated with objection) over secular moral values (usually (...) associated with provision). In this article, we first argue for a legal right to one kind of conscientious provision: referral for procedures prohibited at Catholic hospitals. We then argue that a premise in that argument—the principle of comparably trivial institutional burdens—justifies legal protections for some additional forms of conscientious provision that include, for example, writing prescriptions for contraception or medical abortions. However, this principle cannot justify legal protections for other forms of conscientious provision, for instance, the right to perform surgical abortions or gender-affirming hysterectomies at Catholic hospitals. (shrink)

In the article “Principled Conscientious Provision: Referral Symmetry and Its Implications for Protecting Secular Conscience,” Abram L. Brummett, Tanner Hafen, and Mark C. Navin reject what they call the “referral asymmetry” in U.S. conscientious objection law in medicine, which recognizes rights of conscientiously objecting physicians to withhold referrals for medical interventions but does not (yet) recognize rights of physicians to make referrals for medical interventions to which they are morally committed but to which their health care institutions are morally opposed. (...) This commentary concentrates on a second asymmetry, namely, the relationship of a health care provider's referral or nonreferral to the medical standard of care. The commentary argues that this second asymmetry seems to require action more appropriately recognized as civil disobedience than conscientious provision of referral. (shrink)

Catholic health care is often viewed as antithetical to secular conceptions of autonomy. This view can engender calls to protect “choice” in Catholic facilities. However, this view is built on a fundamental misunderstanding of the Ethical and Religious Directives for Catholic Health Care Services (ERDs). This commentary, which responds to “Principled Conscientious Provision: Referral Symmetry and Its Implications for Protecting Secular Conscience,” by Abram Brummett et al., seeks to demonstrate the nuance of the ERDs as well as to address some (...) of the challenges various Catholic identities have when interpreting and living out the ERDs so that all patients receive high-quality, compassionate care. By highlighting the Church's desire to protect all people at every stage, I hope to dispel the caricatures that often result from misunderstandings by Catholics and non-Catholics alike. (shrink)

Sport faces many challenges in creating fair, interesting, and meaningful competitions that highlight and reward the qualities widely valued in sport, such as natural talents, dedication, and competitive savvy. The Paralympic Games illuminate both the challenge and a thoughtful way of responding by organizing events that group athletes with comparable levels of impairment so that raw physical discrepancies don't overwhelm differences in talent or dedication. It may be helpful to reflect on how gender is used in decisions about who competes (...) against whom. Gender has long served as a rough proxy for differences in size and strength. For sports where size and strength matter, those are the dimensions along which competitors should be matched, not their gender identity. In that sense, gender is incidental to fair competition in sport. Because playing sports is good for people in so many ways, we should provide abundant opportunities that are widely available and enjoyable for all people. (shrink)

In transplant medicine, the use of normothermic regional perfusion (NRP) in donation after circulatory determination of death raises ethical difficulties. NRP is objectionable because it restores the donor's circulation, thus invalidating a death declaration based on the permanent cessation of circulation. NRP's defenders respond with arguments that are tortuous and factually inaccurate and depend on introducing extraneous concepts into the law. However, results comparable to NRP's—more and higher‐quality organs and more efficient allocation—can be achieved by removing organs from deceased donors (...) and using normothermic machine perfusion (NMP) to support the organs outside the body, without jeopardizing confidence in transplantation's legal and ethical foundations. Given the controversy that NRP generates and the convoluted justifications made for it, we recommend a prudential approach we call “ethical parsimony,” which holds that, in the choice between competing means of achieving a result, the ethically simpler one is to be preferred. This approach makes clear that policy‐makers should favor NMP over NRP. (shrink)

Well-trained, competent therapists are crucial for safe and effective psychedelic-assisted therapy (PAT). The question whether PAT training programs should require aspiring therapists to undergo their own PAT—commonly referred to as “experiential training”—has received much attention within the field. In this article, we analyze the potential benefits of experiential training in PAT by applying the framework developed by Rolf Sandell et al. concerning the functions of any training therapy (the therapeutic, modeling, empathic, persuasive, and theoretical functions). We then explore six key (...) domains in which risks could arise through mandatory experiential training: physical and psychological risks; negative impact on therapeutic skill; justice, equity, diversity, and inclusion; dual relationships; privacy and confidentiality; and undue pressure. Ultimately, we argue that experiential training in PAT should not be mandatory. Because many PAT training programs already incorporate experiential training methods, our exploration of potential harms and benefits may be used to generate comprehensive risk-mitigation strategies. (shrink)

Normothermic regional perfusion (NRP) is a relatively new approach to procuring organs for transplantation. After circulatory death is declared, perfusion is restored to either the thoracoabdominal organs (in TA-NRP) or abdominal organs alone (in A-NRP) using extracorporeal membrane oxygenation. Simultaneously, surgeons clamp the cerebral arteries, causing a fatal brain injury. Critics claim that clamping the arteries is the proximate cause of death in violation of the dead donor rule and that the procedure is therefore unethical. We disagree. This account does (...) not consider the myriad other factors that contribute to the death of the donor, including the presence of a fatal medical condition, the decision to withdraw life support, and the physician's actions in withdrawing life support and administering medication that may hasten death. Instead, we claim that physicians play a causative role in many of the events that lead to a patient's death and that these actions are often ethically and legally justified. We advance an “all things considered” view according to which TA-NRP may be considered ethically acceptable insofar as it avoids suffering and respects the wishes of the patient to improve the lives of others through organ donation. We conclude with a series of critical questions related to the practice of NRP and call for the development of national consensus on this issue in the United States. (shrink)

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)

The integration of genomics into public health and medicine is happening at a faster rate than the accrual of the capabilities necessary to ensure the equitable, global distribution of its clinical benefits. Uneven access to genetic testing and follow‐up care, unequal distribution of the resources required to access and participate in research, and underrepresentation of some descent groups in genetic and clinical datasets (and thus uncertain genetic results for some patients) are just some of the reasons to center justice in (...) genomics. A more just genomics is an imperative rooted in the ethical obligations incurred by a publicly funded science that is reliant on human data. These features of genomics indebt the genomics enterprise and compel the expanded scope of responsibility proposed by the authors of this special report. The report begins to define justice in genomics for different stakeholder groups and proposes substantial shifts in power, resource distribution, scientific practice, and governance that could enable genomics to meet its obligations to humanity. (shrink)

Despite increased efforts to ensure diversity in genomic research, the exclusion of minority groups from data analyses and publications remains a critical issue. This paper addresses the ethical implications of these exclusions and proposes accountability for reasonableness (A4R) as a framework to promote fairness and equity in research. Originally conceived by Norman Daniels and James Sabin to guide resource allocation in the context of health policy, A4R emphasizes publicity, relevance of reasons, enforcement, and revision as essential for legitimacy and trust (...) in the decision‐making process. The authors argue that A4R is also relevant to resource allocation in research and that, if adequately informed and incentivized by funding agencies, institutional review boards, and scientific journals, researchers are well‐positioned to assess data‐selection justifications. The A4R framework provides a promising foundation for fostering accountability in genomics and other fields, including artificial intelligence, where lack of diversity and pervasive biases threaten equitable benefit sharing. (shrink)

Governance of biomedical research in the United States has been characterized by ethical individualism, a mode of reasoning that treats the individual person as the center of moral concern and analysis. However, genomics research raises ethics issues that uniquely affect certain genetically related communities as collectives, not merely as aggregates of individuals. This is especially true of identifiable populations—including Indigenous Peoples—that are often minoritized, socially marginalized, or geographically isolated. We propose an alternative, complementary framework based on the United Nations Declaration (...) on the Rights of Indigenous Peoples (UNDRIP) (2007), which explicitly recognizes both individual and collective rights. We use the CARE Principles for Indigenous Data Governance as a case study to show how this UNDRIP‐based framework can complement the individual‐focused national standard for research oversight represented by the Belmont principles, thereby better protecting Indigenous Peoples’ rights and interests in genomic data. (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)

The rapid advances in genomics over the last decade have come to fruition amid intense public discussions of justice in medicine and health care. While much emphasis has been placed on increasing diversity in genomics research participation, an overly narrow focus on recruitment eschews recognition of the disparities in health care that will ultimately shape access to the benefits of genomic medicine. In this essay, we suggest that achieving a just genomics, both now and in the future, requires an explicit (...) ELSI of translation—normative and pragmatic scholarship that embraces the interconnectedness of research and clinical care and centers the obligations of researchers, institutions, and funders to mitigate inequities throughout the translational pipeline. We propose core principles to guide an ELSI of translation and to ensure that this work balances the value of the generalizable knowledge that genomics research generates and the value of the individuals and communities who make this research possible. (shrink)

This paper describes the unique values of, challenges within, and opportunities presented by embedded ELSI ethnography. Drawing from our six‐year embedded ELSI study of the WISDOM (Women Informed to Screen Depending on Measures of Risk) trial, we present three examples of the variable ways we engaged with the WISDOM trial's scientific team. WISDOM is a preference‐sensitive, pragmatic, randomized controlled trial of risk‐based breast cancer screening informed by genomics. Our embedded ELSI approach included multiple modes of engagement: (a) Trial investigators sought (...) bioethics expertise; for example, we were asked to consult on traditional bioethics topics such as consent as well as more complex questions about whether to implement a specific risk‐assessment approach on only one race‐defined group of trial participants. (b) As the ELSI investigators, we identified ethical concerns in issues that surfaced via ethnography and considered them in the Bioethics Working Group; for example, there were concerns about the implementation processes that the WISDOM team viewed as logistical challenges. (c) Our presence in WISDOM working group conversations and our expertise on classic social science topics, including race and gender, offered opportunities to engage on the spot with topics such as how to include transgender participants in a trial initially focused on “women's health”; through such engagement, the value of social science became clear to the trial investigators. The paper elaborates on the dynamic relationship between our ethnographic observations, the Bioethics Working Group discussions, and the contributions of each to our real‐time ELSI interventions in these examples. The methods and experiences we describe here suggest modes of engagement that, in combination, have the potential to expand the role of ELSI to offer real‐time intervention on issues related to equity, inclusion, and justice in genetic and genomic research. (shrink)

Scientific data‐sharing and open science initiatives are increasingly important mechanisms for advancing the impact of genomic research. These mechanisms are being implemented as growing attention is paid to the need to improve the inclusion of research participants from marginalized and underrepresented groups. Together, these efforts aim to promote equitable advancements in genomic medicine. However, if not guided by community‐informed protections, these efforts may harm the very participants and communities they aim to benefit. This essay examines potential benefits and harms of (...) open science and explores how to advance a more just vision of open science in genomics. Drawing on relational ethics frameworks, we argue that researchers should consider their obligations to participants as well as the broader communities that are impacted by their research. We propose eight strategies to provide a foundation of practical steps for researchers to reduce the possibility of harms stemming from open science and to work toward genomic justice. (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)

The practice of recontact in genomic medicine has the power to help rectify long‐standing inequities in genetic testing. However, if not delivered systematically, recontacting practices also have the potential to reinforce these same inequities. Recontact, which occurs when contact between a clinician and patient is reinitiated after a relationship has ended, is often in search of or in response to updated interpretation or results. Currently, recontact is happening in a patient‐driven and ad hoc manner, undermining its potential to benefit all (...) patients. In this paper, the authors position justice as an additional argument in favor of systematic recontact and an argument against the predominantly patient‐initiated model. They argue that patients from equity‐deserving groups should be early beneficiaries of an emerging responsibility to recontact patients. The authors share illustrative clinical vignettes and propose role‐specific and systems‐level solutions to rightfully position recontact as a tool to promote a more equitable clinical genomics future. (shrink)

Genomics holds significant potential for conservationists, offering tools to monitor species risks, enhance conservation strategies, envision biodiverse futures, and advance climate justice. However, integrating genomics into conservation requires careful consideration of its impacts on biodiversity, the diversity of scientific researchers, and governance strategies for data usage. These factors must be balanced with the varied interests of affected communities and environmental concerns. We argue that conservationists should engage with diverse communities, particularly those historically marginalized and most vulnerable to climate change. This (...) inclusive approach can ensure that genomic technologies are applied ethically and effectively, aligning conservation efforts with broader social and environmental justice goals. Engaging diverse stakeholders will help guide responsible genomic integration, fostering equitable and sustainable conservation outcomes. (shrink)

Sixty‐one million Americans and approximately a billion people worldwide live with some form of disability that limits one or more major life activities. The field of precision medicine continues to grapple with how to best serve disability communities. In this paper, we suggest that precision medicine faces an ethical tension between its goal to treat or cure disabling conditions and views that consider disability as a marginalized identity. We appeal to the concepts of recognition justice and distributive justice to argue (...) that the ELSI community should take a more proactive role in promoting disability inclusion in precision medicine's practice and research. We also highlight two priorities for the ELSI community moving forward: facilitating greater collaboration between genetics and genomic professionals and disability communities and advocating for inclusive research design and disability accommodations in the research process. (shrink)

Effectively addressing ethical issues in precision medicine research in Africa requires a holistic social contract that integrates biomedical knowledge with local cultural values and Indigenous knowledge systems. Drawing on African epistemologies such as ubuntu and ujamaa and on our collective experiences in genomics and big data research for sickle cell disease, hearing impairment, and fragile X syndrome and the project Public Understanding of Big Data in Genomics Medicine in Africa, we envision a transformative shift in health research data governance in (...) Africa that could help create a sense of shared responsibility between all stakeholders in genomics and data‐driven health research in Africa. This shift includes proposing a social contract for genomics and data science in health research that is grounded in African communitarianism such as solidarity, shared decision‐making, and reciprocity. We make several recommendations for a social contract for genomics and data science in health, including the coproduction of genomics knowledge with study communities, power sharing between stakeholders, public education on the ethical and social implications of genetics and data science, benefit sharing, giving voice to data subjects through dynamic consent, and democratizing data access to allow wide access by all research stakeholders. Achieving this would require adopting participatory approaches to genomics and data governance. (shrink)

Community engagement and participatory research have been appropriately employed to increase the relevance, rigor, and acceptability of all types of research, but these approaches may be particularly important in genomics and biomedical research on sensitive traits such as neurodevelopmental, psychiatric, and behavioral ones. Here, we provide an overview of past and ongoing efforts in community engagement in genomics studies and consider successes and opportunities for further improvement. Informed by this knowledge as well as one of the author's experiences, we set (...) out a vision for a more equitable and collaborative genomics where wider communities, including social, ethnic, and other communities that share a particular trait, are included in the research as peers and collaborators, not solely as objects of study. (shrink)

As shocking as He Jiankui's genetic experiment resulting in the world's first gene‐edited babies may have been, a socioethical inquiry into this paradigmatic case of scientific misconduct reveals its deep roots in genetic and scientific nationalism, as manifested in the widely accepted practice of yousheng (superior birth or eugenics) in China and the country's authoritarian pursuit of science superpower status. Along with eugenics, bionationalism has long been an international phenomenon. A global sociobioethics or ethical transculturalism is thus necessary to adequately (...) investigate the macrolevel sociopolitical, historical, and transnational forces, such as bionationalism, that structurally shape bioethical issues and people's responses to them, causing the systematic undermining of essential bioethical norms and the instrumentalization of human life. (shrink)

Genomics research is regularly appropriated in social and political contexts to publicly legitimize unjust and malicious political views, policies, and actions. In recent years, there have been high‐profile cases of mass shooters, public intellectuals, and political insiders using genomics findings to convince audiences that deadly force and coercive policies against racial minorities are warranted. To create a just genomics, geneticists must consider what makes their research so attractive and adaptable for the legitimization of unjust ends and what they can do (...) to counter such appropriations. We offer insights and recommendations drawing from our research into the many ways online white nationalist and far‐right political movements mobilize genetics research to promote their racist, sexist, antisemitic, and homophobic views. First, geneticists should identify and change routine research practices that feed eugenic thinking. Second, geneticists should adopt creative extra‐scholarly communication efforts to counter the use of their field's research that occurs in nonscholarly spaces. Third, we identify permissive epistemological and professional practices within the genetics field that have enabled such unjust appropriations to thrive, and we recommend strategies for institutional reform. (shrink)

The everyday harms of structural racism and discrimination, perpetuated through institutions, laws, policies, and practices, constitute social determinants of health, but measures that account for their debilitating effects are largely missing in genetic studies of complex diseases. Drawing on insights from the social sciences and public health, we propose critical methodologies for incorporating tools that measure structural racism and discrimination within genetic analyses. We illustrate how including these measures may strengthen the accuracy and utility of findings for diverse communities, clarify (...) elusive relationships between genetics and environment in a racialized society, and support greater equity within genomics and precision health research. This approach may also support efforts to build and sustain vital partnerships with communities and with other fields of research inquiry, centering community expertise and lived experiences and drawing on valuable knowledge from practitioners in the social sciences and public health to innovate biomedical and genomic study designs aimed at community health priorities. (shrink)

The promise of genomic medicine lies in the opportunity to improve health outcomes via a personalized approach to management, grounded in genetic and genomic variation unique to an individual. However, disparities and inequities mar this remarkable landscape of genomic innovation. Prior efforts to understand these inequities have focused on populations for which genetic testing is relatively protocolized or where test utility varies greatly by ancestry groups, where equitable outcomes are more clearly defined. We therefore consider the current landscape of rare (...) disease genomics, in which diagnostic approaches vary widely and utility remains to be fully understood, and suggest a path forward: how ecosocial theory may be used to guide novel equity‐focused initiatives that incorporate illness narratives to improve population health. We present examples of narrative medicine in rare disease and reimagine the role this discipline may play in genomic sequencing studies, toward incorporation of the unique illness narrative into clinical genetics and genomics practice. Approaches that broaden the definitions of disease and of outcomes of interest will force the field to grapple with its racist history and begin to advance health equity and promote justice so that genomic medicine may truly deliver on its promise. (shrink)