ABSTRACT:Much has been written about the deplorable state of American health care, but rarely with the wealth of historical and political information packed into Peter Swenson’s Disorder: A History of Reform, Reaction, and Money in American Medicine (2021). In this meticulously researched and comprehensive study of the role of organized medicine, particularly the American Medical Association (AMA) and affiliated state and county medical societies, Swenson provides detailed insight into the AMA’s political evolution from a force advocating progressive reforms to a (...) protective guild backed by powerful economic and ideological interests. Swenson addresses the conflicts leading to and arising from these movements, always with an eye on the profession’s failure over the last century to fulfill its implicit social contract. Swenson describes the American medical disorder without fear or favor, including a public health system in disarray, defective government regulation of drugs, unchecked and concealed commercial influence on medical research, publications, and clinical guidelines. Swenson’s hope is clear: that a progressively reformed AMA—combined with a broad coalition of concerned citizens and legislators—will lead the medical profession back to its rightful mission. (shrink)

ABSTRACT:Novel biotechnologies produce new person-related biological entities, such as cell lines, organoids, and synthetic organisms, that tend to disrupt existing concepts, taxonomies, modes of evidence production, as well as moral norms and values. This raises the question of how we can manage these new person-related biological entities. This article identifies and analyzes key conceptual, ontological, epistemological, and ethical aspects of such entities in order to suggest how to make, manage, and regulate them. It argues that in order to avoid conceptual (...) vagueness and taxonomic confusion, it is important to clarify how person-related biological entities relate to existing concepts and to make new concepts where necessary. Ontologically, we need to determine the thing- and person-likeness of such entities. Epistemically, we must provide measures to verify the characteristics of person-related biological entities and to provide high-quality knowledge of their implications (outcomes). And ethically, we must clarify the moral status, rights, and responsibility for and of the entities, and how they will change our norms and values. Addressing these issues up front may improve our making and managing of person-related biological entities. (shrink)

ABSTRACT:This illustrated essay describes the graphic diagnosis memoir as a form of illness narrative that uses a different way of telling stories than standard prose. A cartoon is broken into sequenced segments that ask the reader to jump across the gaps between the panels at the same time as they bridge the images and text assembled in each panel. To be successful in presenting a graphic story, the artist must be able to express an idea, but also must be able (...) to project, or imagine, how readers will be able link ideas, images, and words. The cartoon diagnosis story makes the diagnosis relevant and visible. It does so by recognizing what reader and artist share, then adding, between the spaces, what separates them. (shrink)

ABSTRACT:In 2022, John Abramson published Sickening: How Big Pharma Broke American Healthcare and How We Can Repair It. The book illustrates how large pharmaceutical companies have become misinformation machines that have corrupted peer-reviewed journals, systematic review authors, and guideline committees. Industry influence includes selective reporting of clinical trial results and selection of control groups likely to enhance benefits and disguise side effects. Other documented forms of influence include clear conflicts of interest for members of guideline committees and even direct intimidation. (...) The book concludes with a series of implementable reforms, such as ensuring the accuracy and completeness of evidence, developing an independent National Health Board, designing clinical research to optimize health outcomes, requiring the posting of research data so that independent scholars can replicate analyses, and ensuring the accuracy of direct consumer advertising. Abramson’s book is a must read for students of medicine, public health, and public policy. (shrink)

ABSTRACT:Good science fiction can be a successful vehicle for portraying justice. Science fiction can stimulate moral imagination in much the same way as the most effective justice theories, connecting the world in which we live with a range of alternative futures deliberately and creatively made plausible. A selective examination of classic and recent science fiction stories and novels provides contextual framing for considering questions of climate justice, virtuous personal action in the face of structural injustice, and the problem of what (...) justice means when some people are regarded as “other.” By connecting compelling images of individual responsibility with the complex challenges posed by striving for social justice, science fiction can also help render justice work appealing and achievable—an essential step that is reinforced in closing by a brief set of maxims. (shrink)

ABSTRACT:A wide range of research uses patterns of genetic variation to infer genetic similarity between individuals, typically referred to as genetic ancestry. This research includes inference of human demographic history, understanding the genetic architecture of traits, and predicting disease risk. Researchers are not just structuring an intellectual inquiry when using genetic ancestry, they are also creating analytical frameworks with broader societal ramifications. This essay presents an ethics framework in the spirit of virtue ethics for these researchers: rather than focus on (...) rule following, the framework is designed to build researchers’ capacities to react to the ethical dimensions of their work. The authors identify one overarching principle of intellectual freedom and responsibility, noting that freedom in all its guises comes with responsibility, and they identify and define four principles that collectively uphold researchers’ intellectual responsibility: truthfulness, justice and fairness, anti-racism, and public beneficence. Researchers should bring their practices into alignment with these principles, and to aid this, the authors name three common ways research practices infringe these principles, suggest a step-by-step process for aligning research choices with the principles, provide rules of thumb for achieving alignment, and give a worked case. The essay concludes by identifying support needed by researchers to act in accord with the proposed framework. (shrink)

ABSTRACT:Daniel Callahan died on July 16, 2019, just short of his 89th birthday. In the years since, we have seen the overturning of abortion rights, a concern central to his scholarship and musings about the place of religion in American civic life. Callahan’s journey from lay Catholic journalist and commentator at Commonweal to a co-founder of the Hastings Center, during his decade of doubt, is especially relevant today as America revisits established precedent governing a woman’s right to choose. His life-long (...) struggle with faith and the secularization of bioethics is a story worth telling, as it may foster dialogue across a divide between religious and laical thinkers that has fractured our political discourse. We recall Callahan’s misgivings about the marginalization of religious perspectives in public life; he sought not the denial of complexity nor of difference in views, but rather the importance of free and honest debate around deeply held beliefs, contextualized in the realities of the contemporary world. Callahan’s ambivalence about his faith remains a part of the fabric of American life, a story that Callahan chronicled to our collective benefit for over a half-century. (shrink)

ABSTRACT:In 1740, Joanna Stephens (fl. 1720–1741) produced a recipe for a tonic that she claimed cured bladder stones. Although she had the support of some notable and powerful men in the medical community and empirical evidence that her tonic worked, it took two years of petitioning, discussing, and even (unsuccessfully) crowd-sourcing before Parliament relented and awarded her the sum she requested to take her tonic public. Stephens’s interaction with the scientific community serves as a case study for how epistemic credibility (...) shapes how communities hear, interpret, and react to testimonies of knowledge claims from marginalized community members. Stephens’s position as an outsider, both qua woman and qua experimentalist, meant that she was effectively and almost immediately written out of her own story by learned and powerful men with who had both vested interests in the cure for the stone and epistemic prejudices that made it impossible for them to hear Stephens’s claim that she had made a discovery. (shrink)

Abstractabstract:This essay uses the lens of moral status to explore the question of whether elephants ought to count as persons under the law. After distinguishing descriptive, moral, and legal concepts of personhood, the author argues that elephants are (descriptively) at least "borderline persons," justifying an attribution of full moral status and, thereby, a solid basis for legal personhood. A final section examines broad implications of elephant personhood.

Abstractabstract:This article provides an in-depth ethical analysis of living donor uterus transplantation, incorporating clinical, psychological, and qualitative study data into the discussion. Although the concept of living organ donors as patients in their own right has not always been present in the field of transplantation, this conceptualization informs the framework for living donor ethics that we apply to living uterus donation. This framework takes root in the principles of research ethics, which include respect for persons, beneficence, and justice. It incorporates (...) an analysis based on eight potential vulnerabilities of living donors: capacitational, juridic, deferential, social, medical, situational, allocational, and infrastructural. Finally, it recognizes that special relationships—such as that of the living donor advocate with the potential donor—require special responsibilities, including identifying vulnerabilities and engaging donors in a shared decision-making process. Directed and non-directed uterus donors require separate ethical analyses because their different relationships with recipients will influence the types of vulnerabilities, they are subject to as well as the potential benefits they may gain from donation. (shrink)

Abstractabstract:Vaccine hesitancy continues to pose a formidable obstacle to increasing national COVID-19 vaccination rates in the US, but this is not the first time that American vaccination efforts have confronted resistance and apathy. This study examines the history of US vaccination efforts against smallpox, polio, and measles, highlighting persistent drivers of vaccine hesitancy as well as factors that helped overcome it. The research reveals that logistical barriers, negative portrayals in the media, and fears about safety stymied inoculation efforts as early (...) as the 18th century and continue to do so. However, vaccine hesitancy has been markedly diminished when trusted community leaders have guided efforts, when ordinary citizens have felt personally invested in the success of the vaccine, and when vaccination efforts have been tied to broader projects to improve public health and social cohesion. Deliberately cultivating such factors could be an effective strategy for lessening opposition today, when COVID-19's distinctive characteristics make addressing vaccine hesitancy more urgent than it has ever been. (shrink)

Abstractabstract:Recent clinical trials of psychedelic drugs aim to treat a range of psychiatric conditions in adults. MDMA and psilocybin administered with psychotherapy have received FDA designation as "breakthrough therapies" for post-traumatic stress disorder (PTSD) and treatment-resistant depression (TRD) respectively. Given the potential benefit for minors burdened with many of the same disorders, calls to expand experimentation to minors are inevitable. This essay examines psychedelic research conducted on children from 1959 to 1974, highlighting methodological and ethical flaws. It provides ethics and (...) policy recommendations for psychedelics research involving children and adolescents, including recognizing that the psychedelic experience is an ineffable one that makes informed proxy consent for parents, guardians, and others especially challenging. Psychedelic experiences are associated with novel benefits and risks, such as significant personality changes, shifts in fundamental values, and possible re-exposure to traumatic memories. These effects may alter the process of personality development in minors. Recommendations for ethically sound psychedelics research in minors include strict adherence to eligibility criteria, including a comprehensive family and individual psychiatric, substance use, and trauma history. An age-appropriate assent process that includes considerations related to the use of therapeutic touch should be developed. In addition, oversight by data safety monitoring boards and patient and family advocates, coupled with the adoption of pharmacoequity best practices, will help to ensure safety and fairness of psychedelics research in children. (shrink)

abstractBiomedical research in the United States has contributed enormously to science and human health and is conducted in several thousand institutions that vary widely in their histories, missions, operations, size, and cultures. Though these institutional differences have important consequences for the research they conduct, the organizational taxonomy of US biomedical research has received scant systematic attention. Consequently, many observers and even participants are surprisingly unaware of important distinguishing attributes of these diverse institutions. This essay provides a high-level taxonomy of the (...) institutional ecosystem of US biomedical research; illustrates key features of the ecosystem through portraits of eight institutions of varying age, size, culture, and missions, each representing a much larger class exhibiting additional diversity; and suggests topics for future research into the research output of institutional types that will be required to develop novel approaches to improving the function of the ecosystem. (shrink)

Abstractabstract:Expectations about future events underlie practically every decision we make, including those in medical research. This paper reviews five studies undertaken to assess how well medical experts could predict the outcomes of clinical trials. It explains why expert trial forecasting was the focus of study and argues that forecasting skill affords insights into the quality of expert judgment and might be harnessed to improve decision-making in care, policy, and research. The paper also addresses potential criticisms of the research agenda and (...) summarizes key findings from the five studies of trial forecasting. Together, the studies suggest that trials frequently deliver surprising results to expert communities and that individual experts are often uninformative when it comes to forecasting trial outcome and recruitment. However, the findings also suggest that expert forecasts often contain a "signal" about whether a trial will be positive, especially when forecasts are aggregated. The paper concludes with needs for further research and tentative policy recommendations. (shrink)

Abstractabstract:In The Trusted Doctor: Medical Ethics and Professionalism (2020), Rosamond Rhodes presents a new theory of medical ethics based on 16 duties she considers central to medical ethics and professionalism. She asserts that her theory is "bioethical heresy," as it contradicts established "principlism" and "common morality" approaches to ethics in medicine. Rhodes advocates the development of parallelism between clinical and ethical decision-making and a systematic approach that emphasizes duties over principles and rules to facilitate the development of a "doctorly character" (...) among medical decision-makers. Rhodes further asserts that her theory and approach necessitate the cultivation of virtues contained in Aristotle's Nicomachean Ethics. But Rhodes's insistence that "medical professionals," not just doctors, are covered by her theory is open to critique, as is her conflation of ethic and morals, especially around the question of the "doctorly character" upon which her duty-based theory hinges. This assessment argues that applicants to medical schools and allied health training programs be screened for specific virtues—honesty, diligence, curiosity, and compassion—to facilitate reinforcement of these pre-professionalized inclinations throughout the habituation processes of medical training. This would increase the probability of turning fear and hope to cure and care via reasoning and affective models performed within an ethical medical framework—even while what this ethical framework should reference remains under debate. (shrink)

Abstractabstract:This article examines the complexity of narratives of space and time which support the diagnosis of multiple sclerosis, and the consequences for patients disadvantaged by deficits in social cognition or socioeconomic status in areas relating to literacy. In the context of demonstrating the significance of narratives of space and time in the diagnostic process for multiple sclerosis, the article discusses new strategies for treatment that engage the arts and humanities and presents a brief history of the disease and current diagnostic (...) criteria, before discussing the MS Society of Great Britain and Ireland's awareness and fundraising campaign from the 1980s, and Tom Kempinski's play Duet for One, inspired by the life of cellist Jacqueline du Pré. The conclusion addresses the urgency of heightening patient and clinician awareness of how the presentation, interpretation, and sharing of narrative accounts of disease influence health outcomes and makes suggestions about how to adjust for these biases. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Introduction to the Special SectionFranklin G. MillerHappy is a female elephant who has been confined at the Bronx Zoo for over 40 years. In 2018 the Nonhuman Rights Project sued the Wildlife Conservation Society, which manages the zoo, seeking habeas corpus for Happy in order to release her to an elephant sanctuary. Numerous amicus curiae briefs were filed in favor and against the petition on behalf of Happy. The (...) case reached the highest court in New York State, which denied the petition of the plaintiff in June 2022.This special section includes views on the case of Happy by David DeGrazia, Martha Nussbaum, and Christine Korsgaard, three distinguished moral philosophers who have made significant contributions to animal ethics. The essays by Martha Nussbaum and Christine Korsgaard are drawn from the amicus briefs that they filed in the legal proceedings, which they agreed could be published here.Professor Nussbaum applies her "capabilities approach" as a foundation for promoting wellbeing and recognizing rights to Happy and to elephants in general. She argues that Happy is a being with a meaningful life and is entitled to be treated with respect and dignity, which is incompatible with her conditions of confinement at the zoo. Professor Korsgaard applies her understanding of the moral philosophy of Immanuel Kant to the case of Happy—a "cognitively sophisticated [End Page 1] animal" which, like human beings, should be treated as an end in herself and not merely as a means to the purposes of human beings. Professor DeGrazia, in an invited essay, analyzes the meanings of "person" and examines the pertinent characteristics of elephants that make them at least "borderline persons," with the moral status of possessing basic rights.While Happy remains confined at the Bronx Zoo, these three incisive contributions challenge readers to reflect on the ethical treatment of nonhuman animals, especially those with complex and rich capacities of intelligence and emotion. [End Page 2]Franklin G. MillerWeill Cornell Medical College, New YorkCopyright © 2023 Johns Hopkins University Press... (shrink)

Abstractabstract:Long before COVID-19 made social distancing familiar, people with cystic fibrosis (CF) already practiced such behaviors. CF is held up as a classic example of genetic disease, yet people with CF are also susceptible to bacteria from the environment and from other CF patients. Starting in the 1980s, a bacterial epidemic in the CF population highlighted clashing priorities of connection, physical safety, and environmental protection. Policymakers ultimately called for the physical separation of people with CF from one another via recommendations (...) that reconfigured the CF community. Simultaneously, medical researchers recognized that one highly transmissible CF pathogen called cepacia was being developed for environmental applications and got the EPA to limit cepacia's environmental deployment. Environmental regulations speak to the challenge of useful microbes that harm a minority, but CF cross-infection also involves legal implications for microbial and genetic discrimination, social consequences for CF communities, and ethical questions about balancing autonomy, harms, and benefits. As scientists increasingly study connections between host genetics, microbial genetics, and infectious risks, CF is a vital referent. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Amicus BriefMartha C. Nussbaumii. summary of the argumentThis brief argues that the law requires reformation to protect our modern scientific and philosophical understanding that many animals can live their own meaningful lives and that the Court should reform the law in this case.1 Modern science demonstrates that elephants are complex beings that can form a conception of the self, as observed by Judge Fahey, form strong social and emotional (...) bonds among themselves and others, and that the Zoo's conduct harms Happy in both physical and intangible ways.Furthermore, this brief argues that the lower courts in Lavery I and II applied the wrong philosophical framework to the question of whether certain non-human animals should be considered legal persons. Instead of animal rights being based on the capacity to engage in a social contract and to bear legal duties, the proper framework for animal rights is the capabilities approach, which asks how the law can help animals like Happy not only live but thrive. Accordingly, this brief explains the importance of this appeal, the Court's opportunity to reform [End Page 15] the field of animal law, and the potential to release Happy from a life of captivity, ensuring she lives the rest of her life in a manner that respects her capabilities.iii. argument1. This Case Matters Because It Is Time to Reform the Law to Protect Our Modern Scientific and Philosophical Understanding That Many Animals Are Capable of Living Their Own Meaningful LivesModern science now recognizes a very important fact about many animals, including elephants. They are not merely biological units that simply need food and a suitable environment to survive and maintain a viable population. Today, scientists view many animals as beings capable of living their own meaningful lives. Early Indian and Roman cultures understood the complexity of animal lives and the implications of this complexity surrounding the humane treatment of animals; public awareness of this fact is widespread today. Almost all ancient Greek and Roman philosophical schools attributed complex forms of cognition and numerous emotions to animals,2 a precursor to our current laws against cruel practices to animals.What philosophy and, more recently, science have understood but the law has not, is that elephants are sentient beings who can feel emotion, foster relationships, create communities, and form a conception of the self. Our current legal system fails to respect species-specific, central capabilities. Although each of the fifty states has animal cruelty laws,3 these laws protect only a small number of animals and fail to constrain, to any meaningful extent, the widespread infliction of suffering. They ban only the intentional, purposeful suffering of some animals, and fail to recognize the impact that captivity, lack of relationships, and solitude cause a creature like Happy.This Court has the opportunity to create legal precedent that provides these living creatures the legal right to thrive and survive in ways that coincide with their specific capabilities, and prevent not only the infliction of physical pain, but emotional and psychological injury as well.2. The Magical Lives of ElephantsElephants are cognitive, complex creatures with distinct societies, emotions, and lives. They form societies that foster the wellbeing of each member, in which their emotions and development from childhood through adulthood are readily apparent.4 A combat staged between humans and elephants in 55 B.C. by the Roman leader Pompey paints a prime example of these complex emotions and connections with other animals, namely humans. Surrounded in the arena, the elephants perceived that they had no hope of escape. According to Pliny, the elephants then "entreated the crowd, trying to win its compassion with indescribable [End Page 16] gestures, bewailing their plight with a sort of lamentation."5 The audience, moved to pity and anger by their plight, rose to curse Pompey—feeling, wrote Cicero, that the elephants had a relation of commonality (societas) with humans.6 However, this connection with humans cannot be substituted for true, similar companionship from other elephants, which Happy has lacked for almost two decades.Elephants' ability to connect with other elephants and animals may be attributable to their long life spans; they are the most... (shrink)

Abstractabstract:Public health emergencies are fraught by epistemic uncertainty, which raises policy issues of how to handle that uncertainty and devise sustainable public health responses. Among such responses, a herd immunity policy might be an option. Particularly before the development of vaccines, the current COVID-19 pandemic has highlighted the polarized nature of the political debate concerning the ethical feasibility of herd immunity strategies. This article provides a conceptual framework tailored to uncover the ethical rationale behind such strategies. Clarity on this issue (...) is important in order to facilitate the terms of the political debate when tackling future health emergencies. (shrink)