Bioethics Literature Research Articles

War, Bioethics, and Public Health

This paper argues that bioethics as a field should broaden its scope to include the ethics of war, focusing on war’s public health effects. The “Introduction” section describes the bioethics literature on war, which emphasizes clinical and research topics while omitting public health. The section, “War as a public health crisis” demonstrates the need for a public health ethics approach by framing war as a public health crisis. The section, “Bioethics principles for war and public health” proposes six bioethics principles for war that address its public health dimensions: health justice, accountability, dignified lives, public health sustainability, nonmaleficence, and public health maximization. The section, “Justifying and applying bioethical principles” shows how these principles inform ethical analysis, including just war theory and military ethics. The section, “From principles to practice” envisions ways in which bioethicists can promote these principles in practice through research, teaching, and service. The “Conclusion” section urges bioethicists to engage with war as a public health crisis, including calling attention to war’s impact on civilians, especially women, children, and other vulnerable groups.

Biosafety, biosecurity, and bioethics

The COVID-19 pandemic has highlighted the importance of biosafety in the biomedical sciences. While it is often assumed that biosafety is a purely technical matter that has little to do with philosophy or the humanities, biosafety raises important ethical issues that have not been adequately examined in the scientific or bioethics literature. This article reviews some pivotal events in the history of biosafety and biosecurity and explores three different biosafety topics that generate significant ethical concerns, i.e., risk assessment, risk management, and risk distribution. The article also discusses the role of democratic governance in the oversight of biosafety and offers some suggestions for incorporating bioethics into biosafety practice, education, and policy.

Analysis of 20 Years of Ethics Consultations at a U.S. Children's Hospital.

AbstractEmpirical studies of pediatric clinical ethics cases are scant in the biomedical and bioethics literature. In this study, more than 100 detailed records of clinical ethics consultations spanning from 2000 to 2020 at a moderately sized U.S. Mid-Atlantic children's hospital were abstracted and analyzed. Findings of the analysis were generally consistent with other studies in pediatric clinical ethics, with additional insight into aspects of moral distress associated with cases, family engagement with consultations, and other characteristics of interest also documented. Over the 20-year time frame, ethics consults were completed on average twice a year, with a detectable upward trend. Consultations were requested across the spectrum of services and units within the hospital, with critical care environments represented most frequently and genetic and neurological conditions being the most common primary diagnoses. Ethical analysis most commonly related to questions around the principles of autonomy and beneficence.

On What Grounds? A Pilot Study of References Used in Clinical Ethics Consultation and Education.

In accordance with standards published by the American Society for Bioethics and Humanities (ASBH), ethics consultants are expected to provide recommendations that align with scholarly literature, professional society statements, law, and policy. However, there are no studies to date that characterize the specific references that ethics consultants and educators use to inform their work. To address this gap, a convenience sample of clinical ethics consultants and educators was surveyed online through two major listservs for clinical ethics, the ASBH Clinical Ethics Consultation Affinity Group (CECAG) and the Association of Bioethics Program Directors (ABPD). Ninety-five ethics consultants and/or educators with diverse educational background, credentials, and experience provided responses. In total, 451 references, 315 of which were unique, were reported. These references were broken into 6 categories after analysis: bioethics literature (divided into articles and books), professional society documents (divided into professional society statements and codes of ethics), federal/state/uniform/case law, hospital/health system policies, official religious teachings, and other. We found extensive variation and minimal overlap in the references respondents used for ethics consultation and education, even when referring to the same topics. Future research directions should include conducting more systematic efforts to characterize the references used by ethics consultants across the US; determining whether demographic characteristics of consultants influence the references used; and ascertaining whether the variation in references used reflects genuine disagreements in consultants' and educators' bioethical analysis or recommendations.

The conceptual injustice of the brain death standard.

Family disputes over the diagnosis of brain death have caused much controversy in the bioethics literature over the conceptual validity of the brain death standard. Given the tenuous status of brain death as death, it is pragmatically fruitful to reframe intractable debates about the metaphysical nature of brain death as metalinguistic disputes about its conceptual deployment. This new framework leaves the metaphysical debate open and brings into focus the social functions that are served by deploying the concept of brain death. In doing so, it highlights the epistemic injustice of medicolegal authorities that force people to uniformly accept brain death as a diagnosis of death based on normative considerations of institutional interests, such as saving hospital resources and organ supplies, rather than empirical evidence of brain death as death, which is insufficient at best and nonexistent at worst. In light of this injustice, I propose the rejection of the uniform standard of brain death in favor of a choice-based system that respects families' individualized views of death.

Mitochondrial replacement techniques for treating infertility

Mitochondrial replacement techniques (MRTs) usually aim to prevent the genetic transmission of maternally inherited mitochondrial diseases. Until now, only the UK and Australia have implemented specific legal regulations of MRTs....

The Declaration of Helsinki in bioethics literature since the last revision in 2013.

The World Medical Association has announced that a new revision process of the Declaration of Helsinki has been started. This article will identify the criticisms that have been made in the bioethics literature, particularly since the last revision. In addition, criticisms are discussed that were made in the literature even before the last revision and have not fallen silent. The plausibility of the recommendation for a change in the Declaration of Helsinki is examined.

Embroidering Infertility: Using Art to Reveal and Resist Technobiopower in In Vitro Fertilisation Experiences

In the Western context of delayed motherhood and declining fertility, an array of fertility enhancements have emerged. While bioethical debates and literature on the technological prowess of these enhancements proliferate, it is useful to explore the lived experience of women undergoing them. This article uses Tabitha Moses’ artwork Investment, a series of embroidered hospital gowns, as a vehicle to explore lived experience of women engaging with fertility enhancements, including in vitro fertilisation. This analysis challenges dominant biomedical and corporate discourses framing fertility enhancements as benign. Using constructs of patriarchy, biopower, biopolitics (Foucault), and technobiopower (Haraway), we identify how power over women’s bodies is extended through fertility enhancements. Haraway’s notion of figuration supports the analysis. Understood as a tropic melding of semiotic and material, the figuration of The Infertile Woman offers a way to explore discursive operations of power and amid them the creation of a new form of reproductive labour.

Medical ethics education as translational bioethics.

We suggest that in the particular context of medical education, ethics can be considered in a similar way to other kinds of knowledge that are categorised and shaped by academics in the context of wider society. Moreover, the study of medical ethics education is translational in a manner loosely analogous to the study of medical education as adjunct to translational medicine. Some have suggested there is merit in the idea that much as translational research attempts to connect the laboratory scientist's work to its implications for patient care, translational ethics focuses on bringing ethics scholarship into the sphere of personal and public action. We distinguish the term 'translational ethics' (the study of ethics being translated between academy, classroom and clinic) from other prominent definitions in the bioethics literature. To do this, we build off a notion of knowledge translation that focuses on the nonlinear movement of information that comes to professionals through multiple competing sources. We suggest that this knowledge, and particularly knowledge about ethics, becomes embodied by the individual. It is through a reflective practice that internally embedded ethics knowledge might be modified, and this work might be best carried out with a moral community that maintains a sense of practical wisdom. Applying this translational approach to the study of medical ethics education can be both academically relevant and practically useful. This view of translation can help bridge the evident, multidirectional relationships between research, education and performance. It might also create further opportunities to develop medical ethics education theory.

Clinical Ethics Consultations: What do Requestors Say?

This symposium collection of twelve narratives from individuals who experienced clinical ethics consultations provides perspectives from a group that has not been adequately explored in the bioethics literature. The authors represent a variety of stakeholders who received ethics consultations: healthcare providers and family members. This commentary will focus on three themes addressed in the different narrative accounts: the reasons for requesting an ethics consultation; the expectations of the narrators from the consultation; and the conclusions the authors drew from their experience of the ethics consultation.

Hidden Ethical Challenges in Health Data Infrastructure.

Data infrastructure includes the bureaucratic, technical, and social mechanisms that assist in actions like data management, analysis, storage, and sharing. While issues like data sharing have been addressed in depth in bioethical literature, data infrastructure presents its own ethical considerations, apart from the actions (such as data sharing and data analysis) that it enables. This essay outlines some of these considerations-namely, the ethics of efficiency, the visibility of infrastructure, the power of standards, and the impact of new technologies-in order to invite the bioethics community to participate in conversations about infrastructure, as their expertise is both needed and welcomed.

Conspiracy theories, clinical decision-making, and need for bioethics debate: A response to Stout.

Although people who endorse conspiracy theories related to medicine often have negative attitudes toward particular health care measures and may even shun the healthcare system in general, conspiracy theories have received rather meager attention in bioethics literature. Consequently, and given that conspiracy theorizing appears rather prevalent, it has been maintained that there is significant need for bioethics debate over how to deal with conspiracy theories. While the proposals have typically focused on the effects that unwarranted conspiracy theories have in the public health context, Nathan Stout's recent argument concentrates on the impacts that such theories have at the individual level of clinical decision-making. In this article, I maintain that duly acknowledging the impacts of conspiracy theories that raise Stout's concern does not require bioethics debate over the proper response to the influence of conspiracy theories in healthcare. Having evaluated two possible objections, I conclude by briefly clarifying the purported import of the response to Stout.

Supporting Solidarity

Supporting Solidarity

End-of-Life Narratives of Patients who Request Medical Assistance in Dying: A Qualitative Study Protocol

Many groups (healthcare professionals, lawyers, philosophers, non-governmental organisations, bioethics committees, journalists, religious groups, etc.) participate in the bioethical debate about medical assistance in dying (MAiD). Bioethics literature on the topic involve different approaches (analytic, empirical, policy oriented, activist) and various normative perspectives (discourses based on deontological premises as the sanctity of life and human dignity, or on utilitarianism, libertarianism, etc.), some of which are at times irreconcilable. Regarding empirical studies, some voices (e.g., healthcare professionals) have been widely considered but the voice of people who request MAiD has been neglected. Understanding the personal and medical circumstances that lead to MAiD, which can only be achieved by listening to the phenomenological discourse of those involved, is key. This study aims to provide knowledge from the testimonies and experiences of patients who have initiated a MAiD request. We believe this research protocol can increase our understanding of a social and academic controversy that lacks important information to be complete. By doing so, this type of research could inform and improve end-of-life public policies, and particularly the health care of individuals who request a MAiD. We propose a qualitative phenomenological study using semi-structured interviews of people in the process of requesting MAiD, as outlined in the Ley Orgánica 3/2021, de regulación de la eutanasia (LORE), the Spanish Law on the Regulation of Euthanasia. The study is conducted nationally using a convenience sampling. The number of interviews is determined sequentially and cumulatively, depending on the richness of the narratives and the saturation of the information that has been collected. For the purposes of analysis, the interviews are transcribed verbatim and pseudonymised afterwards. Data analysis is conducted at the same time as data collection. The proposed study has received a favourable report from the Coordinating Committee on Biomedical Research Ethics of Andalusia (CCEIBA).

Discrimination in Abortion Law and the Message the Law is Sending: R (Crowter) v Secretary of State for Health and Social Care

R (Crowter) v Secretary of State for Health and Social Care involved a legal challenge to the law on abortion under the Abortion Act 1967, on the basis that the disability ground ‘expresses’ a negative message about disabled people, based on negative stereotyping, and that this expression is incompatible with Articles 8 and 14 of the European Convention on Human Rights. The case is significant because of the way that rights‐based arguments about abortion were framed; they were not centred on the interests or rights of the pregnant woman or the fetus, but on the rights of disabled people. This framing reflects the well‐known expressivist argument in the disability and bioethics literature. The arguments raised about a potential violation of rights due to ‘the message’ the law is sending could have far‐reaching implications, well beyond the law on abortion.

An assessment of the moral value of neuronal cell models and brain organoids

Advances in stem cell technology enable neuroscientists to develop induced pluripotent stem cell (iPSC)-based neuronal models of varying complexity, ranging from single human brain cells to two-dimensional neuronal cell models and three-dimensional brain organoids. While the discussion on the moral status of brain organoids is taking center stage in the bioethical literature and is invariably linked to the presumed capacity of future brain organoids to develop some form of consciousness, analyses of the moral status of other – less complex – iPSC-based neuronal models are lacking. In this paper we aim to clarify the moral value of various types of existing neuronal models, including brain organoids. We show how it is made up of several layers that may encompass various sorts of considerations, including moral values, the results of empirical research, and biological characteristics. We identify four such layers – instrumental, intrinsic, symbolic, and relational – that are relevant for the assessment of the moral value of neuronal models. We demonstrate that it lies not in a capacity to develop some form of consciousness (which is absent in current iPSC-based neuronal models, including brain organoids), but in other considerations, including the genetic links between models and donors, the ability of models to mimic brain (dys)function, and their symbolic value, all of which are often overlooked in the bioethical literature. Also, we demonstrate that the 'thickness' of the layers (i.e., their moral weight) increases when the neuronal model is more complex. Finally, we discuss the practical-ethical implications of our analysis for the use of neuronal models in research settings, for instance in relation to informed consent and biobank governance. Our four-layer framework can be applied also in moral assessments of other iPSC-based models, including emerging and future cell models.

Methodological and Discursive Considerations for Islamic Bioethics Research and Writing

The past two decades have witnessed a substantial interest in Islamic bioethics research and writing. As more papers are published and a greater number of conferences are held, it is important to reflect on the concepts and concerns that frame the emerging discourse and its nascent academic literature. Accordingly, this paper begins by reflecting on the term Islamic bioethics and the motivations that spur Islamic bioethical deliberation. In so doing, it calls for paying attention to the normative and methodological implications of uniting the disparate discourses represented by the conjunctive term. To further assist consumers in distinguishing various types of Islamic bioethics research and writing, three general categories of scholarly work—Islamic bioethics, Muslim bioethics, and applied Islamic bioethics—are introduced. Next, the paper outlines several lacunae in the extant academic Islamic bioethics literature that emerge from an incomplete engagement with the foundations, elements, and nature of contemporary bioethics discourse. Finally, in order to advance the field and better engage with contemporary bioethical questions, the paper closes by underscoring the need for Islamic bioethics research and writing to become multidisciplinary and involve multilevel ethical analysis.

O-217 Balancing ‘the desires of individuals’ against ‘the situation of the world as a whole’: (Re)considering planetary responsibilities in the context of assisted reproduction

Abstract Study question How do the moral reasons for offering access to assisted reproductive technology (ART) relate to ethical responsibilities generated by sustainability and planetary health duties? Summary answer If one accepts that both governments and medical professionals should yield to environmental sustainability, it is ethically pertinent to balance this against respecting reproductive autonomy. What is known already Respecting autonomy is a central ethical value in the context of reproduction, which, in the context of ART, is considered to generate a prima facie obligation to help people conceive a child in line with their personal goals. Arguments in terms of population ethics, use of planetary resources and climate change are traditionally not considered to counter arguments for access to ART relying on the reproductive autonomy of individuals. This may come under tension due to adjusted encouragements to physicians for being committed to sustainability as part of professional role responsibilities. Study design, size, duration A literature study of academic literature and institutional codes of conduct was performed to inventory how professional duties of physicians are being directed to encompass not only responsibilities towards individual patients, but also towards environmental sustainability. Consideration of earlier documents has shown that, sporadic objections notwithstanding, such arguments have mostly been morally inconsequential in the regulation and praxis of ART. This was critically evaluated against the backdrop of bioethical literature and ethical principles. Participants/materials, setting, methods Literature study; conceptual analysis; normative analysis. Main results and the role of chance Climate change and its future impact is on the political agenda as a shared responsibility of governments, industry, and citizens. This is seeping through into communiqués of professional medical bodies and codes of conduct. In the particular context of ART, this has recently led to several calls to recognize the impact of climate change on fertility. This has not (yet) led to an institutionalization of the more provocative claim, sometimes voiced in popular media, that fighting climate change may require restraints in the area of procreation. Nonetheless, claims that physicians have a responsibility to contribute to a sustainable healthcare sector at least require ethical attention in this regard, especially in view of observed shifts compared to canonic positions. Likewise, if we expect governments to take efforts to attain sustainability goals, this may evoke moral questions about possible tensions with moral commitments to offering access to assisted procreation. This contribution addresses (i) the limited critical stance towards beliefs that procreation is problematic from a planetary health perspective, and (ii) the need to scrutinize the ethical balance for reproductive health professionals between accommodating (individual) procreative goals and more global responsibilities towards the world at large. Limitations, reasons for caution This is an agenda-setting analysis, and so it is not meant to serve as an exhaustive discussion of these moral concerns. While attention for future impacts of climate change is gaining momentum in healthcare, controversial suggestions to cap procreation is largely still limited to lay contexts. Wider implications of the findings This analysis is meant to propel ethical reflection about the balance between global elements that may restrain individuals’ reproductive options. This puts into focus that moral considerations about individual and societal (and planetary) interests in the context of ART require continued specification and careful ethical deliberation. Trial registration number n/a

Against commercial-assisted suicide.

The idea of commercial-assisted suicide lives a marginal existence in the bioethical literature, despite its significant presence in popular culture. The practice of commercial-assisted suicide (CAS) is defined as suicide assistance performed for a financial reward through a contractual agreement between a customer and a service-provider, who does not necessarily need to be a medical professional. While CAS does indeed offer some potential solutions regarding the moral controversies surrounding physician-assisted suicide (PAS), I defend the idea that adopting it as policy ultimately proves morally indefensible and practically inefficient. This is due to the fact that the commodification of a given good necessarily implies the creation of a market of said good; as such, what I propose in this paper is a moral and practical evaluation of a market of CAS. In order to do so, I first examine the arguments in favor of CAS as put forward by Roland Kipke, who argues that any liberal defense of PAS necessarily implies a defense of CAS. In the first section, I argue against this idea using the liberal values of autonomy and equality of opportunity. In the second section of the paper, I argue that a market of CAS would be gravely dysfunctional due to one particular characteristic of death, namely, that is not compensable ex post. I conclude by arguing that while the practice of CAS may not prove morally problematic, the inevitable market that it will create should it be legalized most certainly will.

The Invisibility of the Asian American Identity in North American Bioethics

This Perspective sheds light on the major barriers behind Asian American invisibility in bioethics, such as the inconsistencies in defining a coherent identity in North American society, the systemic mechanisms of invisibility from history to healthcare based on immigration status, and scarcity of bioethics literature about their perspectives. The consequences of Asian American invisibility in bioethics and healthcare practises are also discussed, including a reflection of the interconnected mechanisms between academic bioethical theory and healthcare practises that perpetuate Asian American invisibility. Finally, recommendations are provided to begin a critical reflection of bioethical theory with Asian Americans in mind. This serves as the stepping-stone for future discussions on Asian American bioethics, to highlight a missing perspective in North American race-based activism regarding the equity, diversity, and inclusion of an underrepresented demographic.