Advocacy and Bioethics: Aspiration, Obligation, and Negotiation.

AbstractA long-standing tenet of healthcare clinical ethics consultation has involved the neutrality of the ethicist. However, recent pressing societal issues have challenged this viewpoint. Perhaps now more than ever before, ethicists are being called upon to take up roles in public health, policy, and other community-oriented endeavors. In this article, I first review the concept of professional advocacy and contrast this conceptualization with the role of patient advocate, utilizing the profession of nursing as an exemplar. Then, I explore the status of advocacy in clinical ethics and how this conversation intersects with the existing professional obligations of the bioethicist, arguing that the goals of ethics consultation and ethical obligations of the clinical ethicist are compatible with the role of professional advocate. Finally, I explore potential barriers to professional advocacy and offer suggestions for a path forward.

The Diaspora Human Genomics Institute Launches the Together for Change Initiative: A Transformative, Historic Partnership to Ensure Health Equity in a Time of Unprecedented Technological Advancements.

Human subjects research and drug and device development currently base their findings largely on the genetic data of the non-Hispanic White population, excluding People of Color. This practice puts People of Color at a distinct and potentially deadly disadvantage in being treated for sickness, disability, and disease, as seen during the COVID-19 pandemic. Major disparities exist in all chronic health conditions, including cancer. Data show that less than 2% of genetic information being studied today originates from people of African ancestry. If genomic datasets do not adequately represent People of Color, new drugs and genetic therapies may not work as well as for people of European descent. Addressing the urgent concern that historically marginalized people may again be excluded from the next technological leap affecting human health and the benefits it will bring will requires a paradigm shift. Thus, on behalf of underserved and marginalized people, we developed the Together for CHANGE (T4C) initiative as a unique collaborative public-private partnership to address the concern. The comprehensive programs designed in the T4C initiative, governed by the Diaspora Human Genomics Institute founded by Meharry Medical College, will transform the landscape of education and health care and positively affect global Black communities for decades to come.

"She was finally mine": the moral experience of families in the context of trisomy 13 and 18- a scoping review with thematic analysis.

INTRODUCTION: The value of a short life characterized by disability has been hotly debated in the literature on fetal and neonatal outcomes. METHODS: We conducted a scoping review to summarize the available empirical literature on the experiences of families in the context of trisomy 13 and 18 (T13/18) with subsequent thematic analysis of the 17 included articles. FINDINGS: Themes constructed include (1) Pride as Resistance, (2) Negotiating Normalcy and (3) The Significance of Time. INTERPRETATION: Our thematic analysis was guided by the moral experience framework conceived by Hunt and Carnevale (2011) in association with the VOICE (Views On Interdisciplinary Childhood Ethics) collaborative research group. RELEVANCE: This article will be of interest and value to healthcare professionals and bioethicists who support families navigating the medically and ethically complex landscape of T13/18.

Chapitre 6. Des éthiques collectives à une gestion adaptative des conflits organisationnels.

The idea of collaborative governance is gaining popularity. However, how can it be truly collaborative? Decision-making systems with diverse stakeholders must deal with different positions, roles, interests, missions, observations, and values. The co P·R·I·M·O·V (Position, Role, Interest, Mission, Observation, Values) bioethics tool aims to improve the practice of sustainable, collaborative, and democratic development of technosocial initiatives through its user-friendly format for professional ethicists. The tool follows the logic of Conflict of Interest (CoI) analysis used in organizational ethics frameworks. CoI, as an analytical unit in ethics, allows the anticipation and management of problems that may compromise the short- and long-term activities of a program and its governance. This tool was built on a case study for the implementation of monitoring of antibiotic use in animal health in Quebec, Canada. The use of this bioethics tool is strategic and can help negotiate positions and thus co-construct a common frame of reference between the stakeholders in view of a collaborative governance favoring cooperation.

Abolishing morality in biomedical ethics.

In biomedical ethics, there is widespread acceptance of moral realism, the view that moral claims express a proposition and that at least some of these propositions are true. Biomedical ethics is also in the business of attributing moral obligations, such as "S should do X." The problem, as we argue, is that against the background of moral realism, most of these attributions are erroneous or inaccurate. The typical obligation attribution issued by a biomedical ethicist fails to truly capture the person's actual obligations. We offer a novel argument for rife error in obligation attribution. The argument starts with the idea of an epistemic burden. Epistemic burdens are all of those epistemic obstacles one must surmount in order to achieve some aim. Epistemic burdens shape decision-making such that given two otherwise equal options, a person will choose the option that has the lesser of epistemic burdens. Epistemic burdens determine one's potential obligations and, conversely, their non-obligations. The problem for biomedical ethics is that ethicists have little to no access to others' epistemic burdens. Given this lack of access and the fact that epistemic burdens determine potential obligations, biomedical ethicists often can only attribute accurate obligations out of luck. This suggests that the practice of attributing obligations in biomedical ethics is rife with error. To resolve this widespread error, we argue that this practice should be abolished from the discourse of biomedical ethics.

Public health and research ethics education: the experience of developing a new cadre of bioethicists at a Ugandan institution.

Research ethics education is critical to developing a culture of responsible conduct of research. Many countries in sub-Saharan Africa (SSA) have a high burden of infectious diseases like HIV and malaria; some, like Uganda, have recurring outbreaks. Coupled with the increase in non-communicable diseases, researchers have access to large populations to test new medications and vaccines. The need to develop multi-level capacity in research ethics in Uganda is still huge, being compounded by the high burden of disease and challenging public health issues. Only a few institutions in the SSA offer graduate training in research ethics, implying that the proposed ideal of each high-volume research ethics committee having at least one member with in-depth training in ethics is far from reality. Finding best practices for comparable situations and training requirements is challenging because there is currently no "gold standard" for teaching research ethics and little published information on curriculum and implementation strategies. The purpose of this paper is to describe a model of research ethics (RE) education as a track in an existing 2-year Master of Public Health (MPH) to provide training for developing specific applied learning skills to address contemporary and emerging needs for biomedical and public health research in a highly disease-burdened country. We describe our five-year experience in successful implementation of the MPH-RE program by the Mbarara University Research Ethics Education Program at Mbarara University of Science and Technology in southwestern Uganda. We used curriculum materials, applications to the program, post-training and external evaluations, and annual reports for this work. This model can be adapted and used elsewhere in developing countries with similar contexts. Establishing an interface between public health and research ethics requires integration of the two early in the delivery of the MPH-RE program to prevent a disconnect in knowledge between research methods provided by the MPH component of the MPH-RE program and for research in ethics that MPH-RE students are expected to perform for their dissertation. Promoting bioethics education, which is multi-disciplinary, in institutions where it is still "foreign" is challenging and necessitates supportive leadership at all institutional levels.

Translational bioethics: Reflections on what it can be and how it should work.

Translational ethics (TE) has been developed into a specific approach, which revolves around the argument that strategies for bridging the theory-practice gap in bioethics must themselves be justified on ethical terms. This version of TE incorporates normative, empirical and foundational ethics research and continues to develop through application and in the face of new ethical challenges. Here, I explore the idea that the academic field of bioethics has not yet sufficiently analysed its own philosophical foundation for how it can, and should, be practically relevant; neither has it comprehensively discussed the limitations on what impacts bioethicists should pursue. As a result, there has not been adequate training on how to suitably and appropriately impact real-world practices. Moreover, bioethical perspectives are often competing with other strong interests, for example, economic and political, which may weaken their impact on policy-making. The TE approach I propose can not only facilitate practical impacts of academic bioethics by being better informed by real-world ethical issues but it also supports targeted and ethical justifications of the actual impact of academic work in real-world contexts. In this paper, I clarify the premises for this TE approach, identify further challenges and sketch out potential solutions for the implementation of this methodological framework.

Anchor bias, autonomy, and 20th-century bioethicists' blindness to racism.

The central thesis of this article is that by anchoring bioethics' core conceptual armamentarium in a four-principled theory emphasizing autonomy and treating justice as a principle of allocation, theorists inadvertently biased 20th-century bioethical scholarship against addressing such subjects as ableism, anti-Black racism, classism, and other forms of discrimination, placing them outside of the scope of bioethics research and scholarship. It is also claimed that these scope limitations can be traced to the displacement of the nascent concept of respect for persons-a concept designed to address classist and racist discrimination-with the morally solipsistic concept of autonomy.

The Bioethics of Environmental Injustice: Ethical, Legal, and Clinical Implications of Unhealthy Environments.

Environmental health remains a niche topic in bioethics, despite being a prominent social determinant of health. In this paper we argue that if bioethicists are to take the project of health justice as a serious one, then we have to address environmental injustices and the threats they pose to our bioethics principles, health equity, and clinical care. To do this, we lay out three arguments supporting prioritizing environmental health in bioethics based on bioethics principles including a commitment to vulnerable populations and justice. We also highlight and advocate for environmental law efforts that align with these priorities, focusing specifically on the need for a right to a healthy environment. Our intention is to draw attention to the legal and ethical concepts that underlie the importance of a healthy environment, and urge bioethicists to prioritize both legal and ethical advocacy against environmental injustices in their practice.

Blaming the unvaccinated during the COVID-19 pandemic: the roles of political ideology and risk perceptions in the USA.

Individuals unvaccinated against COVID-19 (C19) experienced prejudice and blame for the pandemic. Because people vastly overestimate C19 risks, we examined whether these negative judgements could be partially understood as a form of scapegoating (ie, blaming a group unfairly for an undesirable outcome) and whether political ideology (previously shown to shape risk perceptions in the USA) moderates scapegoating of the unvaccinated. We grounded our analyses in scapegoating literature and risk perception during C19. We obtained support for our speculations through two vignette-based studies conducted in the USA in early 2022. We varied the risk profiles (age, prior infection, comorbidities) and vaccination statuses of vignette characters (eg, vaccinated, vaccinated without recent boosters, unvaccinated, unvaccinated-recovered), while keeping all other information constant. We observed that people hold the unvaccinated (vs vaccinated) more responsible for negative pandemic outcomes and that political ideology moderated these effects: liberals (vs conservatives) were more likely to scapegoat the unvaccinated (vs vaccinated), even when presented with information challenging the culpability of the unvaccinated known at the time of data collection (eg, natural immunity, availability of vaccines, time since last vaccination). These findings support a scapegoating explanation for a specific group-based prejudice that emerged during the C19 pandemic. We encourage medical ethicists to examine the negative consequences of significant C19 risk overestimation among the public. The public needs accurate information about health issues. That may involve combating misinformation that overestimates and underestimates disease risk with similar vigilance to error.

Providing ethics advice in a pandemic, in theory and in practice: A taxonomy of ethics advice.

The pandemic significantly raised the stakes for the translation of bioethics insights into policy. The novelty, range and sheer quantity of the ethical problems that needed to be addressed urgently within public policy were unprecedented and required high-bandwidth two-way transfer of insights between academic bioethics and policy. Countries such as the United Kingdom, which do not have a National Ethics Committee, faced particular challenges in how to facilitate this. This paper takes as a case study the brief career of the Ethics Advisory Board (EAB) for the NHS Covid-19 App, which shows both the difficulty and the political complexity of policy-relevant bioethics in a pandemic and how this was exacerbated by the transience and informality of the structures through which ethics advice was delivered. It analyses how and why, after EAB's demise, the Westminster government increasingly sought to either take its ethics advice in private or to evade ethical scrutiny of its policies altogether. In reflecting on EAB, and these later ethics advice contexts, the article provides a novel framework for analysing ethics advice within democracies, defining four idealised stances: the pure ethicist, the advocate, the ethics arbiter and the critical friend.

Expert Views on Medical Involvement in the Swiss Assisted Dying Practice: "We Want to Have Our Cake and Eat It Too"?

BACKGROUND: Most jurisdictions that allow euthanasia and assisted suicide (AS) regulate it through the medical profession. However, the extent and nature of how medicine should be involved are debated. Swiss AS practice is unusual in that it is managed by lay AS organizations that rely on a law that permits AS when done for nonselfish reasons. Physicians are not mentioned in the law but are usually called upon to prescribe the lethal medications and perform capacity evaluations. METHODS: We analyzed in-depth interviews of 23 Swiss AS experts including ethicists, lawyers, medical practitioners, and senior officials of AS organizations for their views on AS. RESULTS: Although there was agreement on some issues (e.g., need for better end-of-life care), the interviewees' preferred model for AS, and the nature of preferred medical involvement, varied, which we categorized into five types: preference for AS practice as it occurred prior to lay AS organizations; preference for the current lay model; preference for a modified lay model to increase autonomy protections while limiting medical AS normalization; preference for various types of more medicalized models of AS; and, ambivalence about any specific model of medical involvement. The rationales given for each type of model reflected varying opinions on how medicine's role would likely impact AS practice and demonstrated the experts' attitudes toward those impacts. CONCLUSION: The dynamics within the Swiss AS regime, as reflected in the varying views of Swiss AS experts, shed light on the dilemmas inherent to medical scope and involvement in AS, which may have implications for debates in other jurisdictions.

Translational bioethics as a two-way street. Developing clinical ethics support instruments with and for healthcare practitioners.

This article discusses an approach to translational bioethics (TB) that is concerned with the adaptation-or 'translation'-of concepts, theories and methods from bioethics to practical contexts, in order to support 'non-bioethicists', such as researchers and healthcare practitioners, in dealing with their ethical issues themselves. Specifically, it goes into the participatory development of clinical ethics support (CES) instruments that respond to the needs and wishes of healthcare practitioners and that are tailored to the specific care contexts in which they are to be used. The theoretical underpinnings of this participatory approach to TB are found in hermeneutic ethics and pragmatism. As an example, the development of CURA, a low-threshold CES instrument for healthcare professionals in palliative care, is discussed. From this example, it becomes clear that TB is a two-way street. Practice may be improved by means of CES that is effectively tailored to specific end users and care contexts. The other way around, ethical theory may be enriched by means of the insights gained from engaging with practice in developing CES in a process of co-creation. TB is also a two-way street in the sense that it requires collaboration and commitment of both bioethicists and practitioners, who engage in a process of mutual learning. However, substantial challenges remain. For instance, is there a limit to the extent to which a method of moral reasoning can be adapted in order to meet the constraints of a given healthcare setting? Who is to decide, the bioethicist or the practitioners?

Proposed Principles for International Bioethics Conferencing: Anti-Discriminatory, Global, and Inclusive.

This paper opens a critical conversation about the ethics of international bioethics conferencing and proposes principles that commit to being anti-discriminatory, global, and inclusive. We launch this conversation in the Section, Case Study, with a case example involving the International Association of Bioethics' (IAB's) selection of Qatar to host the 2024 World Congress of Bioethics. IAB's choice of Qatar sparked controversy. We believe it also may reveal deeper issues of Islamophobia in bioethics. The Section, Principles for International Bioethics Conferencing, sets forth and defends proposed principles for international bioethics conferencing. The Section, Applying Principles to Site Selection applies the proposed principles to the case example. The Section, Applying Principles Beyond Site Selection addresses other applications of the proposed principles. The Section, Objections responds to objections. We close (in the Section, Conclusion) by calling for a wider discussion of our proposed principles. One-Sentence Capsule Summary: How should bioethicists navigate the ethics of global bioethics conferencing?

Exploring the potential utility of AI large language models for medical ethics: an expert panel evaluation of GPT-4.

Integrating large language models (LLMs) like GPT-4 into medical ethics is a novel concept, and understanding the effectiveness of these models in aiding ethicists with decision-making can have significant implications for the healthcare sector. Thus, the objective of this study was to evaluate the performance of GPT-4 in responding to complex medical ethical vignettes and to gauge its utility and limitations for aiding medical ethicists. Using a mixed-methods, cross-sectional survey approach, a panel of six ethicists assessed LLM-generated responses to eight ethical vignettes.The main outcomes measured were relevance, reasoning, depth, technical and non-technical clarity, as well as acceptability of GPT-4's responses. The readability of the responses was also assessed. Of the six metrics evaluating the effectiveness of GPT-4's responses, the overall mean score was 4.1/5. GPT-4 was rated highest in providing technical (4.7/5) and non-technical clarity (4.4/5), whereas the lowest rated metrics were depth (3.8/5) and acceptability (3.8/5). There was poor-to-moderate inter-rater reliability characterised by an intraclass coefficient of 0.54 (95% CI: 0.30 to 0.71). Based on panellist feedback, GPT-4 was able to identify and articulate key ethical issues but struggled to appreciate the nuanced aspects of ethical dilemmas and misapplied certain moral principles.This study reveals limitations in the ability of GPT-4 to appreciate the depth and nuanced acceptability of real-world ethical dilemmas, particularly those that require a thorough understanding of relational complexities and context-specific values. Ongoing evaluation of LLM capabilities within medical ethics remains paramount, and further refinement is needed before it can be used effectively in clinical settings.

Big Mistake: Knowing and Doing Better in Patient Engagement.

Pushing back on policies favored by dying patients is a challenging endeavor, requiring tact, engagement, openness to bidirectional learning, and willingness to offer alternative solutions. It's easy to make missteps, especially in the age of social media. Holly Fernandez Lynch shares her experience learning with and from the amyotrophic lateral sclerosis (ALS) community, first as a caricature of an ivory tower bioethicist and more recently as a trusted advisor, at least for some. Patient-engaged bioethics doesn't mean taking the view that patients are always right, but even when disagreement continues, progress is possible if academics and patients recognize the unique expertise each has to offer.

Informe del Comité de Bioética de España sobre aspectos del uso secundario de los datos y el espacio europeo de protección de datos / [Report of the Spanish Bioethics Committee on aspects of secondary use of data and the European data protection space]

El presente informe da respuesta a la consulta de la Secretaría de Estado de Sanidad del Ministerio de Sanidad de 26 de mayo de 2023 sobre algunos aspectos del uso secundario de los datos y el espacio europeo de protección de datos. Recibida la consulta, el Comité aprobó el siguiente informe en su reunión plenaria del día 7 de noviembre de 2023, conforme a lo dispuesto en el artículo 78.1 a) de la Ley 14/2007, de 3 de julio, de Investigación Biomédica, que fija entre las funciones del Comité emitir informes, propuestas y recomendaciones para los poderes públicos de ámbito estatal y autonómico en asuntos con implicaciones bioéticas relevantes. (AU)

The Public Performativity of Trust.

Building trust between academic medical centers and certain communities they depend on in the research process is hard, particularly when those communities consist of minoritized or historically marginalized populations. Some believe that engagement activities like the creation of advisory boards, town halls, or a research workforce that looks more like community members will establish or reestablish trust between academic medical centers and racialized communities. However, without systematic approaches to dismantle racism, those well-intended actions become public performativity, and trust building will fail. In this essay, we draw upon foundational ethical principles of trust, distrust, and trust building; apply the concept of bounded justice to performative trust acts; and center the works of Black and Indigenous feminist bioethicists to revisit some of the wisdom and valuable lessons they have contributed. Rebuilding trust is hard to do because people and institutions are often not honest about how hard it is and there is no simple box-checking task that can disentangle our society's injustices, but there are steps to take in this direction. Individuals and institutions can recognize valuable relevant work that has already been written, partake in critical reflection, and then apply insights gained to take both small and sustainable steps toward transformational change and deeper trust.