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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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The release of genetically engineered organisms into the shared environment raises scientific, ethical, and societal issues. Using some form of democratic deliberation to provide the public with a voice on the policies that govern these technologies is important, but there has not been enough attention to how we should connect public deliberation to the existing regulatory process. Drawing on lessons from previous public deliberative efforts by U.S. federal agencies, we identify several practical issues that will need to be addressed if relevant federal agencies are to undertake public deliberative activities to inform decision‐making about gene editing in the wild. We argue that, while agencies may have institutional capacity to undertake public deliberative activities, there may not be sufficient political support for them to do so. Advocates of public deliberation need to make a stronger case to Congress about why federal agencies should be encouraged and supported to conduct public deliberations. [ABSTRACT FROM AUTHOR]

During the Covid‐19 pandemic, the University of California convened the University of California Critical Care Bioethics Working Group, a team of twenty individuals tasked with developing a set of triage procedures. This article highlights several crucial components of the UC procedures and describes the reasoning behind them. The recommendations and the reasoning in the UC protocol are distinctive because of the emphasis the working group placed on grounding its decisions on the public's preferences for triage protocols. To highlight the distinctiveness of the recommendations and reasoning, this article contrasts the UC procedures with the triage procedures known as the "Pittsburgh framework." Among the specific topics discussed are age discrimination, disability discrimination, the prioritization of critical workers for scarce resources, and triage priority for pregnant patients. [ABSTRACT FROM AUTHOR]

Social debates about highly technical topics are often driven by values yet dwell on facts. The debate about whether genetically modified organisms are acceptable in food, for example, focuses on causal claims about consumers' health or the environment, but the language and imagery surrounding it often point to underlying misgivings about the human relationship to nature or the use of science. In such cases, it is not always possible to resolve the factual disputes simply by articulating the facts better. Because of various features of human reasoning—cognitive biases and heuristics, the very nature of facts, and the central role of social trust in how people learn—facts cannot be fully disentangled from values. Three lessons can then be drawn. First, values sometimes need to be discussed at the outset of debate, before or while addressing facts. Second, factual issues can and should sometimes be framed in less politicized ways. Third, factual claims that have a limited evidentiary basis may nonetheless need to be aired and discussed. [ABSTRACT FROM AUTHOR]

Is age discrimination ethically objectionable? One puzzle is that we sometimes assume that the target of both age discrimination and ageism must be older people, yet in poorer nations, older people are generally shown more respect. This article explores the ethical question. It looks first at ethical arguments favoring age discrimination toward younger people in low‐income, less industrialized countries of the global South, using sub‐Saharan Africa as an illustration. It contrasts these with arguments favoring age discrimination toward older people in high‐income, more industrialized countries of the global North, particularly the United States and United Kingdom. Finally, it considers what role, if any, differences in life expectancy, infant and child mortality, and prospects for healthy lives should play in the moral embrace of a particular view by a community. It argues that there can be reasons to favor different types of discrimination in different parts of the world. [ABSTRACT FROM AUTHOR]

The article focuses on the Hastings Center and fundamental ethical and social issues in health care, science, and technology. It reports that the Hastings Center, founded in 1969, is the oldest independent, nonpartisan, interdisciplinary research institute of its kind globally. It highlights the center's influence on shaping ideas that impact key opinion leaders and professional practices in various fields, including end-of-life care, psychiatric practice, and immigrant health care.

The history of research ethics includes ethical norms that do not neatly fit into a rubric of "human subjects protections" but that are nevertheless seen as fundamental ethical dictates. Among these norms is the so‐called social value requirement for clinical research. Recently, however, the ethical foundation for the social value requirement has come under criticism. I seek to clarify the terms of this foundational debate. I contend that much of this discussion—both critiques of the social value requirement as well as recent defenses—is predicated on a framework of research ethics that I refer to as the "transactional model of stakeholder obligations." I argue that this model does not fully capture the ethical considerations that ought to inform the design and conduct of clinical research, and I introduce and defend an alternative framework that I call the "basic structure model of stakeholder obligations." The basic structure model is grounded in a claim that clinical research plays a direct role in establishing the justice or injustice of our social organization and should therefore be governed more explicitly by justice‐based considerations. As such, the model explicitly accounts for the fundamentally social nature of the research enterprise itself. In addition to defending the basic structure model, I show how it provides a more stable foundation for the social value requirement, and I consider some worries about whether the model may be too demanding in practice. [ABSTRACT FROM AUTHOR]

I am a social gerontologist, broadly defined as a social scientist who studies how later life is experienced, structured, and controlled in a society and in social settings. Although gerontology is often confused with geriatrics (a medical specialty), gerontologists are typically not clinicians but may study issues related to old age and health care such as the societal conditions that shape how medical care is provided and financed and how early exposure to education relates to later life health. In this essay, I argue that thinking like a gerontologist is important when considering what makes a good life in late life. To think like a gerontologist is to consider the cultural and societal values—past and present—that shape the experience of aging, to recognize people as complex beings whose individual lives do not follow predictable patterns or easily identified trajectories, and to recognize our own habits of regarding older persons as "other" and the consequences of "othering" for older persons and social systems. After a brief history of gerontology, highlighting a few core concepts that gerontologists share, I propose three important questions to consider regarding a good life in late life. [ABSTRACT FROM AUTHOR]

We have just completed an exhausting nine-month debate on the future of the Affordable Care Act. I see this debate as having ended-as of this writing-in a draw. After months of repeal efforts, Republicans in the House barely passed in early May, with a 217-to-213 margin, the American Health Care Act, which would have significantly amended the ACA. Republicans in the Senate spent the summer trying to arrive at amendments to the AHCA that could attract fifty of their fifty-two votes, but in the end, the clock ran out on their opportunity to enact an amendment without Democratic input. With this legislative failure, we appear to be in a stalemate. The Affordable Care Act remains in place as the law of the land, but the Trump administration seems committed to at best condemning the ACA to malign neglect and at worst actively undermining it at every opportunity. Given the political stalemate, the time is right to reassess the deeper issues at stake and ponder the prospects for a considered compromise on health reform. [ABSTRACT FROM AUTHOR]

In recent years, a robust body of scholarship has emerged that examines ethical challenges facing the learning health organization model. In "Bystander Ethics and Good Samaritanism," James Sabin and colleagues make a valuable addition to this scholarship, identifying and exploring the important question of what researchers' obligations are to patients receiving "usual care" if "that care is seen as suboptimal." The central issue that Sabin et al. faced was whether it would be acceptable for researchers to identify patients with untreated atrial fibrillation but then assign them to a control group that would not receive education about the importance of oral anticoagulation. The authors present this challenge as an issue of "bystander ethics." To avoid being "bystanders" to identified instances of suboptimal care, the research team decided to instead identify a "delayed intervention" group for which they would not determine the members' anticoagulation status, thereby preventing them from knowing that specific patients met the criteria for oral anticoagulants but were not using them. This "workaround" approach strikes me as disingenuous. [ABSTRACT FROM AUTHOR]

In an insightful article published in this issue of the Hastings Center Report, Danielle Wenner criticizes what she describes as transactional approaches to the social value requirement in clinical research and defends a "basic structure approach." Transactional approaches understand social value obligations as arising from transactions (or relationships) between research subjects, investigators, sponsors, and other parties. The basic structure approach, by contrast, understands social value obligations as stemming from the demands of Rawlsian social justice. According to Wenner, "The primary justification for the social value requirement lies not in the ethics of free and fair transactions but rather in the goals of the clinical research enterprise and the nature of its impacts on society. The requirement is justified because it ensures that biomedical progress occurs in a manner constrained by considerations of justice." In this commentary, I will not critique the basic structure approach per se but will raise some concerns that arise when oversight committees, such as institutional reviews boards, attempt to apply it to proposed studies involving human subjects. [ABSTRACT FROM AUTHOR]

In this issue of the Hastings Center Report, Danielle Wenner looks at a few prominent analyses of the social value requirement for clinical research, claiming that they are all based on what she calls a transactional model of research ethics. She argues that the transactional model fails to provide a secure foundation for the social value requirement, and then, appealing to John Rawls, she argues that a more secure foundation lies in the principles of social justice. Wenner's attempt to locate the source of the social value requirement raises important questions regarding its scope and strength. To determine what the social value requirement requires, we need to know why it's a requirement. Does the social value requirement apply to all trials or only to a subset? Is it a necessary condition on ethical research or an important consideration that can conflict with, and sometimes be defeated by, other considerations? Wenner's attempt to answer these questions is obscured by the fact that she mistakenly regards a minority view of research ethics as the mainstream view. Once we correct for that, her analysis of the foundation of the social value requirement provides a valuable opportunity to consider how the ethics of research as an institution might supplement or alter the ethics of individual clinical trials. [ABSTRACT FROM AUTHOR]

In February 2016, the Institute of Medicine released a report, commissioned by the United States Food and Drug Administration, on the ethical and social-policy implications of so-called three-parent in vitro fertilization. The IOM endorses commencement of clinical trials on three-parent IVF, subject to some initial limitations. Also called mitochondrial replacement or transfer, three-parent IVF is an intervention comprising two distinct procedures in which the genetic materials of three people-the DNA of the father and mother and the mitochondrial DNA of an egg donor-can be used to create a child. Three-parent IVF would enable a woman with mitochondrial disease to have a genetically related child without transmitting the disease to the child. The possibility for three-parent children has prompted criticism from many corners. Critics have pointed to ethical issues including safety concerns and risks to children, genetic and germline engineering concerns, the potential exploitation of the third-parent egg donor, donor anonymity and privacy, and objections to creating babies with three parents, which undermines natural and traditional conceptions of procreation. Additionally, developing the technology would involve experimenting on, manipulating, and disposing of embryos. Although the IOM report considers the ethical concerns about the value of the three-parent IVF technology, the IOM failed to give due attention to an important objection to the development of this technology: three-parent IVF lacks the social value necessary to make investment of public resources in it ethical. Unlike the other concerns, this objection is not based on conservativism about new reproductive technologies or default favoritism of the status quo. I argue that the technology does not meet a plausible social value standard to render public research investment into its development ethical. Proponents of three-parent IVF make inaccurate and exaggerated claims that it will eradicate mitochondrial disease and save lives. Were these claims true, proponents would have a strong case for the social value of the technology. But three-parent IVF alone will not eradicate mitochondrial disease, and it will not save lives. Rather, it can create healthy lives. As I discuss, the moral distinction is crucial. Most importantly, investment in three-parent IVF comes at the opportunity cost of researching treatment for mitochondrial disease that would benefit actual, living disease sufferers. [ABSTRACT FROM AUTHOR]

The deeply entrenched, sometimes heated conflict between the disability movement and the profession of bioethics is well known and well documented. Critiques of prenatal diagnosis and selective abortion are probably the most salient and most sophisticated of disability studies scholars' engagements with bioethics, but there are many other topics over which disability activists and scholars have encountered the field of bioethics in an adversarial way, including health care rationing, growth-attenuation interventions, assisted reproduction technology, and physician-assisted suicide. The tension between the analyses of the disabilities studies scholars and mainstream bioethics is not merely a conflict between two insular political groups, however; it is, rather, also an encounter between those who have experienced disability and those who have not. This paper explores that idea. I maintain that it is a mistake to think of this conflict as arising just from a difference in ideology or political commitments because it represents a much deeper difference-one rooted in variations in how human beings perceive and reason about moral problems. These are what I will refer to as variations of moral psychology. The lived experiences of disability produce variations in moral psychology that are at the heart of the moral conflict between the disability movement and mainstream bioethics. I will illustrate this point by exploring how the disability movement and mainstream bioethics come into conflict when perceiving and analyzing the moral problem of physician-assisted suicide via the lens of the principle of respect for autonomy. To reconcile its contemporary and historical conflict with the disability movement, the field of bioethics must engage with and fully consider the two groups' differences in moral perception and reasoning, not just the explicit moral and political arguments of the disability movement. [ABSTRACT FROM AUTHOR]

The history of research on the genetics of intelligence is fraught with social bias. During the eugenics era, the hereditary theory of intelligence justified policies that encouraged the proliferation of favored races and coercively stemmed procreation by disfavored ones. In the 1970s, Berkeley psychologist Arthur Jensen argued that black students' innate cognitive inferiority limited the efficacy of federal education programs. The 1994 controversial bestseller The Bell Curve, by Richard J. Herrnstein and Charles Murray, rehashed the claim that race and class disparities stem from immutable differences in inherited intelligence, which could not be eliminated through social interventions. Today most scientists studying the genetics of intelligence distance themselves from this history of social bias by arguing that their research need not investigate intellectual differences between social groups. Rather, they argue, examining the heritability of intelligence can be socially neutral and may even help to reduce social inequities. I argue, however, that research on the genetics of intelligence cannot be socially neutral. Even if we divorce the heritability of intelligence from a eugenicist mission, measuring intelligence remains useful only as a gage of individuals' appropriate positions in society. Research into the genetics of intelligence ultimately helps to determine individuals' inherited capacity for particular social positions, even when researchers aim to modify the effects of inheritance. [ABSTRACT FROM AUTHOR]

Over the past several decades, medical ethics has gained a solid foothold in medical education and is now a required course in most medical schools. Although the field of medical ethics is by nature eclectic, moral philosophy has played a dominant role in defining both the content of what is taught and the methodology for reasoning about ethical dilemmas. Most educators largely rely on the case-based method for teaching ethics, grounding the ethical reasoning in an amalgam of theories drawn from moral philosophy, including consequentialism, deontology, and principlism. In this article we hope to make a case for augmenting the focus of education in medical ethics. We propose complementing the traditional approach to medical ethics with a more embedded approach, one that has been described by others as 'microethics,' the ethics of everyday clinical practice. [ABSTRACT FROM AUTHOR]

A decade after the completion of the Human Genome Project, the widespread appeal of personalized genomic medicine's vision and potential virtues for health care remains compelling. Advocates argue that our current medical regime 'is in crisis as it is expensive, reactive, inefficient, and focused largely on one size fits all treatments for events of late stage disease.' What is revolutionary about this kind of medicine, its advocates maintain, is that it promises to resolve that crisis by simultaneously increasing the ability to be 'personalized,' 'predictive,' 'preventive,' and 'participatory.' Some call personalized genomic medicine 'P4 Medicine,' inscribing these cardinal virtues into the movement's name. All of these putative virtues have interesting implications for the future of health care. In this essay, we are especially interested in the claims that personalized medicine will lead to a more 'participatory' or 'patient-centered' approach to health care, in which patients are 'empowered' to take more personal control over their care. The rhetoric of patient empowerment is nothing new in health care, but personalized medicine is an interesting case study because it portrays empowerment as one of its key virtues and as a mechanism for fixing the health care 'crisis.' [ABSTRACT FROM AUTHOR]

In our family medicine program, applicants' personal statements largely speak to the value of trusting, continuous doctor-patient relationships. They give poignant examples of patient interactions that have allowed the applicants to experience the privilege of the intimacy with which patients relate to their doctors. Whatever their true motivations for choosing family medicine, the relational values expressed in the personal statement are the ones we celebrate and incentivize in the residency selection process. However, after donning their freshly pressed white coats, new interns in family medicine hear different definitions of value applied to their chosen specialty. [ABSTRACT FROM AUTHOR]

The Hastings Center's chief advancement officer describes values and intellectual interests that undergird his work. "My job is itself collaborative in spirit," Sauder writes. "My primary responsibility is to identify and build connections with a wide variety of people who value ethical decision‐making at the crossroads of health, science, and technology." [ABSTRACT FROM AUTHOR]

This essay, published shortly before the 2020 U.S. presidential election (mired in controversy over a potential judicial appointment to the Supreme Court), celebrates Daniel Callahan's prescient book Abortion: Law, Choice and Morality. Nothing could be timelier. Callahan's central question was the "moral and social" struggle requisite for coherent policies and laws regulating abortion. He rejected "one-value" positions and strove to develop an expansive middle ground. He decried emotion untutored by reason, crude polemics, and bludgeoning: his recipe for a "noxious brew." Callahan's way of thinking preceded the development of a critical health humanities, the advent of moral foundations theory in psychology, and the philosophical concept of a moral imagination. Each of these inheres in his rigorous approach to the abortion problem. His honesty and humility led to a sea change in his position on abortion. Fifty years later, much can still be learned from Callahan's arguments-about abortion and other bioethics issues-most importantly, in how we address wider social issues in these polarized times., (© 2020 The Hastings Center.)

Seeking useful ways to respond to the Covid-19 pandemic, bioethicists have been tempted to claim for themselves what Alasdair MacIntyre characterized in After Virtue as the moral fiction of managerial expertise. They have been eager to offer a wide range of policy prescriptions, presenting themselves as bureaucratic managers and suggesting an expertise that bioethics may not in fact be able to offer. This was evident, for example, in the petition published by The Hastings Center in March 2020. The pandemic could foster a more hopeful future for bioethics if it were to focus attention less on policy decisions that belong to all citizens and more on some of the most basic moral questions that life presents and with which bioethics has always dealt-including, surely, the virtues needed in order to live well in a time of pandemic., (© 2020 The Hastings Center.)

The author replies to a letter to the editor from Felicitas Sofia Holzer concerning Wenner's article "The Social Value Requirement in Research: From the Transactional to the Basic Structure Model of Stakeholder Obligations," in the Hastings Center Report's January‐February 2019 issue. [ABSTRACT FROM AUTHOR]

The writer responds to the article "The Social Value Requirement in Research: From the Transactional to the Basic Structure Model of Stakeholder Obligations," by Danielle M. Wenner, in the January‐February 2019 issue of the Hastings Center Report. [ABSTRACT FROM AUTHOR]

The November‐December 2018 issue of the Hastings Center Report celebrates two anniversaries. In a supplement to the issue, the fifty‐year‐old debate about what "dead" means—a debate launched in 1968 by the publication of the Harvard report on brain death—is dissected and reinvigorated in a set of essays assembled by Robert Truog, of Harvard Medical School's Center for Bioethics, and The Hastings Center's Nancy Berlinger, Rachel Zacharias, and Mildred Solomon. Inside the regular issue, a set of essays celebrates the two‐hundredth anniversary of the publication of Frankenstein; or, The Modern Prometheus, the novel about death, dissection, and reinvigoration and a touchstone for much commentary about emerging biotechnologies. Elsewhere in the issue are contrasting perspectives on physician‐assisted death, and in the lead article, Danielle Wenner explores the requirement, often noted but recently challenged, that medical research must have "social value" to be worth conducting. [ABSTRACT FROM AUTHOR]

I met Dan Callahan in 1986-when I came to pitch him. Coming from a sleek office setting near Boston, I was intrigued by The Hastings Center's higgledy-piggledy environment where so many smart people got to work in a relaxed, inviting atmosphere. I had noticed that the Center was producing a great deal of policy work on a wide range of topics but didn't seem to go further than publishing the highly valuable guidance developed under Dan Callahan's leadership. I ended my pitch, "Look, Dan, where Hastings gets bored and wants to go on to the next topic, my group in Boston gets interested." To my great pleasure, and despite his skepticism, Dan accepted the pitch. Beyond his generous responsiveness to unproven young people, Dan had many other virtues. For one, he was a boundary crosser., (© 2019 The Hastings Center.)

For someone with an outsized influence on a field he helped to create, Dan Callahan was anything but overbearing. Physically compact, thin, and wiry in older age, he spoke at the rapid speed of his mind. Soon after I met him-when I was on the cusp of what would become a year-long residency at The Hastings Center-I found myself seated in his decidedly quaint living room. Dan told a story that evening, one of many that has stuck in my head. It seemed to encapsulate his moral mindset and, in a way, his broader vision for bioethics. I am sure he has told the story many times to many people, but here it is as I recall it., (© 2019 The Hastings Center.)

For more than eleven years, I worked with Dan Callahan as an editor, a liaison with journalists, and a sounding board for ideas. To Dan, every new writing project was a thrill, whether it was for the New Republic or a blog. He consumed a wide range of professional and scholarly literature, followed the news with the eye of a reporter, and called experts when he wanted to learn more about something he had read. The result was a volcanic bubbling of story ideas. If he didn't turn them into articles or books, I sometimes had the feeling that he might burst., (© 2019 The Hastings Center.)

Regulators rely on clinical trials for drug approval and labeling decisions. Health systems and clinicians rely on the evidence from trials to determine treatment, and patients rely on it to decide which courses of care to undertake. Many of these stakeholders presume that the careful review of individual studies is enough to address the ethical and scientific questions that arise in clinical trials. In what follows, however, we demonstrate that explicit consideration of trial portfolios-series of trials that are interrelated by a common set of objectives-is crucial. the ethical acceptability and evidentiary probity of individual trials can change depending on the characteristics of the portfolios in which they are embedded. Second, how trial portfolios are composed, how well they are coordinated, and how efficiently they use information determines the balance of risks and benefits they present as well as their different prospects for generating socially valuable information; these three factors also raise distinct questions of justice., (© 2019 The Hastings Center.)

Although "rationing" continues to be a dirty word for the public in health policy discourse, Nir Eyal and colleagues handle the concept exactly right in their article in this issue of the Hastings Center Report. They correctly characterize rationing as an ethical requirement, not a moral abomination. They identify the key health policy question as how rationing can best be done, not whether it should be done at all. They make a cogent defense of what they call "rationing through inconvenience" as a justifiable allocational technique. And they wisely call for research on the effectiveness and fairness of this approach and other methods of rationing. I fully agree with their approach to rationing and with their argument that the process they provocatively label "rationing through inconvenience" should not be rejected out of hand. But I believe they have underestimated two ways in which the practical impacts of rationing through inconvenience limit its potential usefulness: the asymmetry of its effect on patients and physicians and the way in which it reduces the capacity of health systems to learn from experience., (© 2018 The Hastings Center.)