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The article focuses on the export of cadaveric pituitary glands from communist Bulgaria in the 1980s, used for the production of human growth hormone. The case is explored in the broader context of practices and transnational networks for the supply of pituitaries. Special attention is paid to the changes resulting from the turn to the production of recombinant growth hormone in the mid-1980s, which put an end to the international ‘market’ of pituitary glands. In the last sections, different perspectives are explored to make sense of the case under scrutiny: those of bioethics and biolaw, on the one hand, and of bioeconomy in a globalising world, on the other.
Psychiatric advance directives (PADs) are documents enabling individuals with mental health conditions to specify their treatment preferences for future mental health crises. Despite the benefits of PADs, their implementation has progressed slowly. Concerns about PADs among professionals seem to be part of the explanation. A commonly reported concern is that service users will use PADs to document extensive treatment refusals. Research has not yet explored professionals’ views on ethical conflicts arising from such refusals.
Objectives:
The objective of this study was to explore professionals’ perspectives on ethical conflicts arising from treatment refusals in legally binding PADs.
Methods:
We carried out semi-structured interviews with 14 mental health professionals working in Germany with professional experience with PADs. We prompted discussions using a case report of an ethical conflict arising from a treatment refusal documented in a PAD. We analyzed the data thematically.
Results:
Professionals described the case as extreme yet not unfamiliar. While many felt obligated to respect the PAD, they also felt inclined to override it to promote service user well-being, restore service user autonomy, and protect others. Those inclined to override the PAD focused on scrutinizing its validity and applicability, raising doubts about information disclosure, voluntariness, decision-making capacity, and PAD irrevocability. Professionals believed ethics consultation would help address the ethical conflict.
Conclusions:
Legally binding PADs can create ethical conflicts when they include treatment refusals. While the best policy response remains unclear, professionals can help prevent such conflicts by supporting service users in drafting PADs.
Clinical ethics consultations can be haunting. Ethics consultants have few opportunities to reflect on the affective impact of their work. This book offers detailed cases, confessions, reflections, regrets, and triumphs experienced by ethics consultants. The authors bravely share what haunts them about the complex and demanding work of ethics consultation. Consultants experience moral distress but it’s rarely discussed. Our values are woven into the consultation. We’re not always sure if this is for better or worse. One poignant case may haunt us for our entire career. The second edition of the book includes the cases written by original authors regarding neonatology, pediatrics, palliative care, psychiatry, religious and cultural values, clinical innovation, professionalism, and organizational ethics. The book includes educational activities for ethics committees, consultants, and students at all levels of study. In the second edition, new authors reflect on clinical ethics practice, highlight how our practices have changed, and reflect on equity and diversity dimensions of patient care and ethics consultations.
Dr. Tom Beauchamp wrote multiple seminal articles that influenced bioethics, research ethics, and animal ethics. But his influence extends beyond his academic scholarship. Here we honor Dr. Beauchamp’s contributions as a scholar, mentor, and teacher.
Psychedelics are becoming increasingly available within approved regulatory pathways and in “underground” or recreational settings. However, clinicians’ knowledge and training is insufficient, leading to limitations when discussing benefits and harms with patients. These insufficiencies also create liability risks for clinicians which may be heightened if, as anticipated, the federal government deregulates psychedelics. In light of rapidly changing conditions, stakeholders should work together to increase public and clinical education. Stakeholders should also develop pathways for widely available post-trip counseling services. Such pathways should address the needs of users struggling to process the ongoing emotional and neuropsychiatric effects of their psychedelics experience which can sometimes be disabling. Thoughtful and timely collaboration can lay the groundwork for psychedelic medicine, a newly developing area of clinical practice.
We present a training module in AI ethics designed to prepare a broad group of professionals to recognize and address potential ethical challenges of AI applications in healthcare. Training materials include a two-page checklist, a brief glossary, and three practical case studies. While we have developed and applied this framework for training Research Ethics Committee members in France and South Africa, it can also be helpful in university courses ranging from public health and healthcare law to biomedical engineering and applied ethics.
The translation of bedside experience to pedagogical content presents a unique challenge for the field of bioethics. The contributions are multidisciplinary, the practices are heterogeneous, and the work product is characteristically nuanced. While academic bioethics education programs have proliferated, developing content and pedagogy sufficient to teach clinical ethics effectively remains a longstanding challenge. The authors identify three reasons why progress towards this goal has been slow. First, there is a lack of robust, empirical knowledge for education focused on praxis. Second, the methods employed in academic education tend to focus on traditional didactic approaches rather than engendering competency through interaction and practice—the principle means by which clinical ethicists work. Third, the data practitioners have captured has not been presented in a medium educators and students can most meaningfully interact with.
In this paper, the authors describe a novel pedagogical tool: the Armstrong Clinical Ethics Coding System (ACECS) and interactive visual analytics dashboard. Together, these components comprise an educational platform that utilizes the empirical data collected by the institution’s ethics service. The tool offers four advantages. First, it aids with the identification of ethical issues that present during a consultation at that specific institution or medical unit by making use of a lingua franca comprehensible to both ethicists and non-ethicists. Second, content is centered on issue frequency, type, and relation to other issues. Iterating through cases, requestors, or hospital units allows one to understand cases typologically and through metanarratives that reveal relationships and subtle patterns. Third, the use of interactive data visualizations and data storytelling aids comprehension and retention. Fourth, the process of using the system necessitates understanding the manifold ways each case can be understood, accommodating a wide range of perspectives and ethical lenses, enhancing case analysis and self-reflection conducive to life-long learning.
Parental surrogacy remains a highly controversial issue in contemporary ethics with considerable variation in the legal approaches of different jurisdictions. Finding a societal consensus on the issue remains highly elusive. John Rawls’ theory of public reason, first developed in his A Theory of Justice (1971), offers a unifying model of political discourse and engagement that enables reasonable citizens to accept policies that they do not necessarily support at a personal level. The theory established a promising framework for private citizens with distinct moral positions on the subject to find common ground and, in doing so, to negotiate a consensus regarding the degree and nature of regulation that is palatable to all rational citizens.
Looking at Canadian provincial pediatric health care policies and laws, the best interest standard (BIS) enjoys support. Within philosophy, however, the BIS faces serious opposition. Granted, there remain a few fervent defenders of the BIS in the contemporary literature; however, I argue that while some authors nominally defend the BIS, my analysis reveals that what they really defend is at best a watered down version of it. In this article, I argue that not only must the BIS be understood narrowly, but a substitute decision-maker (SDM) must satisfy the BIS — for an SDM is her patient's fiduciary.
Clinical translational neuroscience (CTN) is positioned to generate novel discoveries for advancing treatments for mental health disorders, but it is held back today by the siloing of bioethical considerations from critical consciousness. In this article, we suggest that bioethical and critical consciousness can be paired to intersect with structures of power within which science and clinical practice are conducted. We examine barriers to the adoption of neuroscience findings in mental health from this perspective, especially in the context of current collective attention to widespread disparities in the access to and outcomes of mental health services, lack of representation of marginalized populations in the relevant sectors of the workforce, and the importance of knowledge that draws upon multicultural perspectives. We provide 10 actionable solutions to confront these barriers in CTN research, as informed by existing frameworks such as structural competency, adaptive calibration models, and community-based participatory research. By integrating critical consciousness with bioethical considerations, we believe that practitioners will be better positioned to benefit from cutting-edge research in the biological and social sciences than in the past, alert to biases and equipped to mitigate them, and poised to shepherd in a robust generation of future translational therapies and practitioners.
This special section brings together international scholars celebrating the 40th anniversary of John Harris’ book, The Value of Life: An Introduction to Medical Ethics (1985), and John Harris and his contributions to the field of bioethics more generally.
In 1974, the Center for Law and Health Sciences at the Boston University School of Law provided legal background papers on informed consent to research to the newly created National Commission for the Protection of Human Subjects of Biomedical and Behavioral Sciences. These papers were written by George J. Annas, the Center’s Director, as well as Barbara F. Katz and I, who were staff attorneys at the time. These papers can be found in the appendices to the Commission reports1 and in our book Informed Consent to Human Experimentation: The Subject’s Dilemma,2 in which we present a refined version of those papers. This project introduced me to the world of human research ethics and the complexities of protecting the rights and welfare of research subjects.3 Over the past fifty years, I have sat on Institutional Review Boards (IRBs), been a member of the FDA’s Pediatric Research Advisory Board, and engaged in varying activities related to human subject protection. During this time, I took for granted that consent forms were the best method for ensuring that subjects were thoroughly informed about all aspects of the proposed research. Like many IRB members, I spent considerable time reviewing, editing, and debating with other IRB members about the precise wording of these forms.
“INTELLECTUAL LIGHTENING”: A tribute to John Harris through a collection of memories, imaginary books, fictional reviews, and an interview. John Harris’ impressive and diverse academic career is illustrated and remembered by his colleagues who each contribute with a special memory, story or fake book review, in order to thank John and to cherish the memories. A good philosopher, a kind person, a teacher, different aspects of his work are discussed.
Bioethics education in residency helps trainees achieve many of the Accreditation Council for Graduate Medical Education milestones and gives them resources to respond to bioethical dilemmas. For this purpose, The Providence Center for Health Care Ethics has offered a robust clinical ethics rotation since 2000. The importance of bioethics for residents was highlighted as the COVID-19 pandemic raised significant bioethical concerns and moral distress for residents. This, combined with significant COVID-19-related practical stressors on residents led us to develop a virtual ethics rotation. A virtual rotation allowed residents flexibility as they were called to help respond to the unprecedented demands of a pandemic without compromising high quality education. This virtual rotation prioritized flexibility to support resident wellbeing and ethical analysis of resident experiences. This article describes how this rotation was able to serve residents without overstraining limited bandwidth, and address the loci of resident pandemic distress. As pandemic pressures lessened, The Providence Center for Health Care Ethics transitioned to a hybrid rotation which continues to prioritize resident wellbeing and analysis of ongoing stressors while incorporating in-person elements where they can improve learning. This article provides a description of the rotation in its final form and resident feedback on its effectiveness.
Jennifer Blumenthal-Barby (2024) has called for bioethics to end talk about personhood, asserting that such talk has the tendency to confuse and offend. It will be argued that this has only limited application for (largely) private settings. However, in other settings, theorizing about personhood leaves a gap in which there is the risk that the offending concept will get uptake elsewhere, and so the problem Blumenthal-Barby nominates may not be completely avoided. In response to this risk, an argument is presented in support of the idea that the role of philosophers and bioethicists, far from ending talk of personhood, ought to be to clarify the concept, and to do so in nuanced ways, given its application for specific kinds of impairments. The case of dementia is used to illustrate this in the context of person-centered care. Ironically, given the stigma attached to dementia, far from the need to end talk of personhood, bioethicists are needed to rescue the concept and clarify its role.
In the twentieth century, settler states have operated through science. At the same time, the field of American bioethics has safeguarded the moral authority of science. It has done so by upholding the settler logics of the sciences that it claimed to hold to account. This chapter explores how the imperial logic of American bioethics works – through its concepts, practices, and imperceptions. To do so, the chapter follows Carolyn Matthews, an everyday American with a rich “vernacular archive” and apt work experiences, across three medical sites and over three postwar decades. It tells Carolyn’s story in two registers – setting Carolyn’s work experience prior to 1974, when the US Congress passed laws for the treatment of human subjects, alongside Carolyn’s moral recounting of those work experiences in the late 1970s. Carolyn’s case offers insight into how the vocabulary and framework of modern American bioethics embeds a moral ontology organized around civic individualism and its safeguarding, as opposed to anticolonialism and its dismantling. The aim of this critique of bioethics through the Americas is to strengthen existing alliances for justice-based science and to inform anticolonial practices – in science, history, and transformative bioethics.
The authors critique the NY Declaration on Animal Consciousness, which does not denounce continued captivity and invasive research in the pursuit of animal consciousness markers. They argue that such research often increases animal suffering by accepting harmful practices. Instead, they propose a nonanthropocentric, ethical framework aligned with the Belmont Report’s principle of beneficence, advocating for noninvasive methods in natural habitats. This approach prioritizes animal well-being, recognizing and safeguarding the intrinsic value of all conscious beings.
The Ethics Committee at Memorial Sloan Kettering Cancer Center (MSK) developed a Bioethics Ambassador Program (BAP); a yearlong educational program to assist clinical and non-clinical staff develop the skills to identify and address common burgeoning ethical issues that can arise during the provision of care to patients with cancer. The goal was to provide greater awareness of the role and services of Ethics, particularly at the institution’s geographically-diverse outpatient care centers and to better-instill a culture of preventative ethics. This article discusses the design and implementation of the first two years of the program and analyzes its strengths, weaknesses, and impact on MSK.
There are increasing calls for coverage of medicine during the Holocaust in medical school curricula. This article describes outcomes from a Holocaust and medicine educational program featuring a study trip to Poland, which focused on physician complicity during the Holocaust, as well as moral courage in health professionals who demonstrated various forms of resistance in the ghettos and concentration camps. The trip included tours of key sites in Krakow, Oswiecim, and the Auschwitz-Birkenau concentration camps, as well as meeting with survivors, lectures, reflective writings, and discussions. In-depth interviews and reflective writings were qualitatively analyzed. Resulting themes centered on greater understanding of the relationship between bioethics and the Holocaust, recognizing the need for moral courage and social awareness, deeper appreciation for the historical roles played by dehumanization and medical power and their contemporary manifestations, and the power of presence and experiential learning for bioethics education and professional identity formation. These findings evidence the significant impact of the experience and suggest broader adoption of pedagogies that include place-based and experiential learning coupled with critical reflection can amplify the impact of bioethics and humanism education as well as the process of professional identity formation of medical students.
Germline gene editing (GGE) is a controversial procedure, prohibited by most intergovernmental and scientific bodies and is not currently medically utilized. However, given circumstances where GGE would be essential for human survival, it is possible that GGE could be ideal, ethical and even necessary. One such possible instance of this circumstance could be long-term presence of humans on other planets. In our paper, we point out that there is a strong case for genetically modifying humans, including through GGE, for a future settlement in space directed at preserving human (and other) species. To avoid unnecessarily suffering and death from such difficult missions and environments, GGE enhancements should be considered, although only if shown to be safe, well-regulated and efficacious. We also examine and detail how major ethical frameworks can be shown to support, rather than prohibit, such procedures.