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Before examining how the regulation of bioethical matters impacts the equal right to live in the world for people with impairments, Chapter 1 elaborates on key concepts relevant for the book’s later chapters: disability, eugenics, ableism, and neoliberalism. It begins with a critical discussion of the medical and social models of disability, the two dominant approaches to understanding disability in disability studies. The chapter also highlights the troubled recent history of eugenics, the concept of ableism and the persistence of ableist policies and practices, as well as the importance and shortcomings of disability rights laws in furthering disability justice and equality.
The introductory chapter outlines the book’s central premise: disabled people have as much right to live in the world as the non-disabled. It introduces the human rights and critical disability studies methods used to interrogate the problem of disability discrimination throughout the life cycle, especially at the beginning and end of life. Along with providing an overview, the introductory chapter argues that the book is particularly needed because disability equal rights struggles remain marginal in mainstream bioethics and law.
The concluding chapter summarises the book’s central argument that laws, policies, and practices which privilege the birth and survival of the non-disabled fundamentally challenge the notion that people with impairments have an equal right to live in the world. It also discusses avenues for further research, before closing with some final remarks.
Despite increasing global respect for disability rights since the 2008 entry into force of the UN Convention on the Rights of Persons with Disabilities (CRPD), the equal right to live in the world for disabled people continues to be undermined. This undermining stems from a range of factors, not least the selective prevention and termination of disabled lives, along with long-standing barriers to life-sustaining care, including restricted access to controlled substances and experimental treatment. Investigating the problem of disability discrimination at the margins of life and death, Tony Bogdanoski draws on a range of materials, including international human rights law, reports of UN treaty monitoring bodies and special rapporteurs, and laws largely from the US, UK, and Canada to explore how selective reproduction, assisted dying, and drug control impact struggles for disability equality. His insights are broad in consequence, spanning the fields of disability studies, human rights, law, and bioethics.
This chapter begins by returning to a key moment for conceptions of medical progress in the context of civil rights movements when a new awareness of the insufficiencies of medical progress as “merely” scientific knowledge gains led to a sustained interest in knowledge that was empowering for patients. Amid the growing numbers of people who challenged the focus on scientific progress, many turned to freedom as a new concept for grounding progress in medicine. At times, this went together with more holistic views of personhood and health and the desire to put self-determination at the heart of theories of progress. Other, related trends acknowledged the potential contradictions between freedom and progress head-on and argued that taking individual freedom seriously implied challenging traditional, scientific/technological forms of medical progress. The chapter concludes with a detailed examination of several recent instances, including personalized medicine, in which technological progress is presented as being highly compatible with individual empowerment and liberation.
Research ethics consultation services (RECS) provide important ethical guidance to various entities, including investigators and Institutional Review Boards. Established in the late 1980s and influenced by funding requirements from the National Center for Advancing Translational Science, RECS have evolved to address ethical challenges in research. This study aimed to identify key barriers and facilitators affecting the success of RECS, particularly in light of changes in funding and institutional support.
Materials and methods:
From a comprehensive list of 55 Clinical and Translational Science Award programs, 20 RECS were purposively sampled for in-depth interviews. Interviews focused on primary functions, accomplishments, barriers, and facilitators of the service. We performed an abductive analysis on transcribed data.
Results:
Twenty-two research ethics consultants from 20 institutions participated. Respondents emphasized their services’ goal of facilitating ethical research, though many faced barriers such as underutilization and lack of awareness among researchers. Facilitators included institutional support and funding. Support often was contingent on institutional leadership facilitating the service into the university’s research enterprise. Participants reported accomplishments, including successful consultations and contributions to institutional policies.
Discussion:
Our findings indicate that RECS play a crucial role in supporting ethical research practices, though their effectiveness is often contingent on institutional relationships and funding. Key recommendations include tracking consults, defining consultation outcomes, and fostering the development of new consultants to sustain the field of research ethics.
The role of conscience in healthcare decision-making is explored in this important intervention in the fields of Health Law and Ethics, Medicine, Nursing and Philosophy. It takes a broad approach to conscience, looking beyond the standard examples of conscientious objection to argue that conscience permeates healthcare decisions. However, it also shows that not all decisions of conscience are worthy of legal or societal protection and that these are interests to be weighed rather than rights. Instead, conscience should be protected only when the individual exercising conscience abides by specific responsibilities. Additionally, the book explores the important issues of complicity with healthcare decisions and institutional or organisational conscience and argues they play an oversized role in general discussions of conscience. It further claims that we ought to pay much more attention to conscientious provision. The book concludes by looking at ways to more effectively regulate claims of conscience.
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.
Anosognosia, a term that denotes a lack of insight into one’s own condition, is a defining characteristic of many psychotic illnesses. As a result, generations of psychiatrists have pursued a paternalistic approach to care. Yet in the past century, the overall trend in patient care has been toward autonomy. What does it mean to respect the autonomy of patients whose lack of insight may bring them harm? This chapter will explore these questions through each of the four principles generally employed in bioethical analysis: beneficence, nonmaleficence, justice, and autonomy. Each will have an illustrative case study and explore how anosognosia can further complicate already perplexing ethical scenarios.
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.