Work In Bioethics Research Articles

Religion at Work in Bioethics and Biopolicy: Christian Bioethicists, Secular Language, Suspicious Orthodoxy.

The proper role, if any, for religion-based arguments is a live and sometimes heated issue within the field of bioethics. The issue attracts heat primarily because bioethical analyses influence the outcomes of controversial court cases and help shape legislation in sensitive biopolicy areas. A problem for religious bioethicists who seek to influence biopolicy is that there is now widespread academic and public acceptance, at least within liberal democracies, that the state should not base its policies on any particular religion's metaphysical claims or esoteric moral system. In response, bioethicists motivated by religious concerns have adopted two identifiable strategies. Sometimes they rely on slippery-slope arguments that, sometimes at least, have empirically testable premises. A more questionable response is the manipulation and misuse of secular-sounding moral language, such as references to "human dignity," and the plights of groups of people labeled "vulnerable."

Ethical Maxims for a Marginally Inhabitable Planet.

Bioethics has largely neglected the Anthropocene and its ethical challenges. This essay asks which ethical norms will serve us well in the face of the coming climate catastrophe. It sketches the climate changes likely for the year 2031 and offers six adaptive maxims, drawn from bioethics work in ICUs and hospices, to guide us through the devastation and transition following environmental and social collapse. These six maxims are: work hard to grasp the immensity of the change; cultivate radical hope; have a line in the sand; appreciate the astonishing opportunity of life at this time; train your body and mind; and act for the future generations of all species. Because we are already in an environmental collapse and the beginnings of social collapse, these maxims are relevant today as well as for the future.

Bioethics and practical justice in the post-COVID-19 era.

The ethical concept of justice, as it relates to the development and deployment of innovative health technologies, commands the fair and equitable distribution of burdens and benefits. In bioethics, specific guidance on practical strategies for achieving what this concept of justice demands are somewhat elusive. Drawing on issues of justice arising or likely to arise in the context of the search for a vaccine or cure for COVID-19, this paper argues for a focus on the concept of "practical justice" in post-pandemic bioethics work. To illustrate the value and promise of this concept, the paper reflects on an approach to achieving practical justice in health biotechnology research that is grounded in a commitment to offer technical assistance to developing and under-resourced nations.

What does solidarity do for bioethics?

Bioethical work on solidarity has yielded an array of divergent conceptions. But what do these accounts add to normative bioethics? What is solidarity’s distinctive social normative role? Prainsack and Buyx...

Disability, Deadly Discourse, and Collectivity amid Coronavirus (COVID-19)

As COVID-19 crosses the globe, disabled people are subject to new medical and discursive realities. Focusing on the consequences of the latter, we utilize news reports from Canada and the UK to argue the current language of pre-existing conditions represents disability as non-life, explaining away the material realities facing disabled persons. This language ignores the distribution of care work in our societies, poverty, and other forms of exclusion facing disabled people and the population more generally. Work on ventilator users points to these existing inequalities, obscured as they may be. This story is not new. Outlining existing narratives within disability studies challenging disability as deadly biological and economic deficiency and situating the ‘pre-existing’ terminology therein, we look to work in disability studies and bioethics to challenge the disability–death equation. We end reviewing counter-narratives by and for disabled people, highlighting the ongoing and life-affirming resistance throughout the disability rights movement.

Communities Matter.

Given the enduring inequities in US health and health care, it is no surprise that particular communities are bearing the disproportionate brunt of the Covid-19 pandemic and our responses to it. Many ethical aspects of the pandemic involve diverse communities bound by race, ethnicity, disability, income, residence, age, and more. How does bioethics engage these communities in theory and in practice? Only faintly, despite Covid-19's relentless reminder that communities matter morally. This article sketches initial directions for developing a community-inclusive bioethics, one that understands communities as critical moral participants in the work of bioethics as well as in health and health care.

Lessons from Frankenstein 200 years on: brain organoids, chimaeras and other ‘monsters’

Mary Shelley’s Frankenstein has captured the public imagination ever since it was first published over 200 years ago. While the narrative reflected 19th-century anxieties about the emerging scientific revolution, it...

Three Kinds of Humility in Bioethics Certification

The author's skepticism about certifying bioethicists has a 20-year history. The hazards of certification include doubts about whether an online, multiple-choice exam measures what is important in bioethical deliberation. Other worries include the potential neglect of informal reasoning processes used by patients and families, the creation of a false sense of expertise, and how certification can disenfranchise lay members of ethics committees. This essay does not seek to reverse the growing trend toward certification but urges humility both in the process of certification and in interpreting the results. Humility is here defined through the works of Judith Andre and Jack Coulehan. Three kinds of humility are described as important for bioethics work: epistemic, moral, and ontological. The current qualifications for taking the certification exam are discussed, and suggestions for a better approach are offered.

Haiku, Spiritual Exercises, and Bioethics

Pierre Hadot has discussed the deep connections between ancient Western philosophy and spiritual exercises. The author appreciates these connections, but he explains why he explored a different path. He began to write haiku as a form of spiritual practice. He wanted to use these short verses to become more mindful, present, and responsive – in his life and in his work in bioethics. After comparing traditional haiku and modern haiku, the author gives some examples from classical sources. Then he considers how reading and writing haiku might help bioethics to focus less on deliberation and choice, and more on attention and perception. Haiku might help bioethics to attend to the contexts, life conditions, and lifeworlds that shape and situate people’s lives. These short poems might even illuminate some of the backgrounds and existential grounds of ethical life. At the end, the author presents some haiku that he wrote about modern life, young children, older adults, illness, medicine, and death.

Exploring the ethics of global health research priority-setting

BackgroundThus far, little work in bioethics has specifically focused on global health research priority-setting. Yet features of global health research priority-setting raise ethical considerations and concerns related to health justice. For example, such processes are often exclusively disease-driven, meaning they rely heavily on burden of disease considerations. They, therefore, tend to undervalue non-biomedical research topics, which have been identified as essential to helping reduce health disparities. In recognition of these ethical concerns and the limited scholarship and dialogue addressing them, we convened an international workshop in September 2015. The workshop aimed to initiate discussion on the appropriate relationship between global and national levels of health research priority-setting and to begin exploring what might be ethically required for priority-setting at each of those levels.Main textThis paper comprises our reflections following the workshop. Its main objective is to launch a research agenda for the ethics of global health research priority-setting. We identify three domains of global health research priority-setting—scope, underlying values and substantive requirements, and procedural considerations. For each domain, specific research questions are highlighted and why they need to be explored is explained. Some preliminary thoughts and normative arguments as to how the research questions might be answered are also offered. For example, we provide initial ideas about the appropriate relationship between different priority-setting levels and what values and substantive considerations should guide or underpin global health research priority-setting as a matter of justice.ConclusionWe anticipate that framing a new research agenda for the ethics of global health research priority-setting will spur ethicists, researchers, and policymakers to refocus their efforts on developing more rigorous and ethically sound approaches to priority-setting.

Clinical bioethics and core competencies of attributes, attitudes, and behaviors: Foundations in philosophy and literature

Summary Philosophy clearly underwrites so much of contemporary bioethics. For example, the work of John Rawls and Norman Daniels provides a foundation for conversations about justice and health care; Alan Wertheimer's conceptual analyses of coercion and exploitation are invaluable to reproductive ethics; much of research ethics relies upon the tenets of utilitarian moral theory, and the ideas of its critics; and thinking surrounding moral reasoning in bioethics draws upon philosophical work on moral particularism, virtue theory and generalist moral thought. The work of Susan Sherwin and Margaret Little has provided a foundation for feminist work in bioethics. There is an area of current bioethical discussion, though, that does not draw upon existing work in philosophy, where it could benefit from doing so. Currently, there is great interest in questions surrounding both the core competencies for healthcare ethics consultants and the appropriate training for future healthcare ethics consultants. The core competencies are currently broken down into three categories: (1) competencies of skill, (2) competencies of knowledge and (3) competencies relating to attributes, attitudes and behaviors (such as forthrightness, humility and the possession of leadership skills). My paper explores the relation between the third category of competencies and the appropriate training for healthcare ethics consultants. While training as it applies to the first two categories of competencies has been addressed, training as it applies to the third category is somewhat curiously undertreated. There may be some reason for this; for example, in contrast to certain types of knowledge, factual knowledge, attributes, attitudes and behaviors might be very challenging to teach. At any rate, I argue that a foundation on which we can rely for help with this issue – this issue of how future healthcare ethics consultants should be trained when it comes to attributes, attitudes, and behaviors – can be found in philosophical discussion about the relation between philosophy and literature. Specifically, I make use of discussion on the question of the extent to which the study of fine literature belongs within moral philosophy. This work illustrates two useful sets of points: that fine literature demands of its reader a certain moral attention (which bears a connection to the attributes and attitudes identified as core competencies for the healthcare ethics consultant) and that literature cultivates that attention as it demands it. This work provides a foundation from which we can address our question regarding the training of future HCECs and it does so in a variety of ways. For one, such work emphasizes the importance of certain attitudes and attributes to reading the moral world and builds upon them by introducing the notion of moral attention. Further, it provides groundwork for the suggestion that the reading of fine literature can inculcate certain habits of mind that I urge are important (though under-recognized) for work in clinical ethics.

Discovering the Neural Nature of Moral Cognition? Empirical, Theoretical, and Practical Challenges in Bioethical Research with Electroencephalography (EEG).

In this article we critically review the neural mechanisms of moral cognition that have recently been studied via electroencephalography (EEG). Such studies promise to shed new light on traditional moral questions by helping us to understand how effective moral cognition is embodied in the brain. It has been argued that conflicting normative ethical theories require different cognitive features and can, accordingly, in a broadly conceived naturalistic attempt, be associated with different brain processes that are rooted in different brain networks and regions. This potentially morally relevant brain activity has been empirically investigated through EEG-based studies on moral cognition. From neuroscientific evidence gathered in these studies, a variety of normative conclusions have been drawn and bioethical applications have been suggested. We discuss methodological and theoretical merits and demerits of the attempt to use EEG techniques in a morally significant way, point to legal challenges and policy implications, indicate the potential to reveal biomarkers of psychopathological conditions, and consider issues that might inform future bioethical work.

No Longer “Handmaiden”: The Role of Social and Sociological Theory in Bioethics

Whether sociology should be part of bioethics has been extensively debated and critiqued. Feminist bioethics has long recognized the role of empirical work in bioethical inquiry; however, much feminist work in bioethics has been sidelined due to critiques of the role of social and sociological theory in bioethics research. In this essay, I examine how sociology plays a much deeper role in bioethical inquiry beyond the contribution of empirical methods. Building on these approaches, I show, through a case study, how social and sociological theory play as vital a role in conducting comprehensive bioethical inquiry as sociological methods and methodology, and thus should no longer be sidelined in empirical bioethics.

A Tale of Two Disciplines: Law and Bioethics.

Fascination with In re Quinlan, the first high-profile right-to-die case in the United States, led the author to law school. By the time she received her law degree, bioethics was emerging as a field of study, and law and bioethics became her field. The mission of legal education is to teach students to "think like a lawyer," which can be a productive way to approach issues in many fields, including bioethics. Legal education can also teach individuals to respect people whose views on bioethics issues differ from their own. This essay describes three areas in which legal training influenced the author's work in bioethics: treatment decisions, research misconduct, and stem cell research.

Bioethics in the law.

The role of law in bioethics is clear. Laws are enforcement tools: they govern which conditions qualify an individual for disability benefits, or what oversight is necessary for clinical trial protocols, or how patent applications for medical devices should be regulated. I initially studied the law in order to enhance my work in bioethics, but in examining how the law works, I have become convinced that the converse opportunity also exists: there are many areas of law that would benefit from greater input from those in the bioethics community.

The Case for Integrating the Environment into the Definition of Bioethics

A profession’s definition of a concept is a powerful act that illuminates key aspects, while leaving discarded notions in the dark. In 1971, Van Rensselaer Potter first coined the term “bioethics” to advocate for the exploration of medical science and values with the goal of protecting life on earth. But, in the years since, bioethics became solely focused on issues in medicine and health care without recognizing their broader links to the environment. This Note argues that it is shortsighted to view bioethics as divorced from the world outside hospital doors. It further argues that an expanded conceptual model of bioethics is necessary in light of the complexities of contemporary society. Bioethical analysis will be inadequate if the narrow scope of the current definition of bioethics remains unchallenged. If Potter’s broader view of bioethics were embraced, bioethical work would include examination of the moral and legal foundations for human health and environmental protection policies. Bioethical analysis could then invite debate on topics like land use and pollution control policies, for example, and not merely on patient care issues within the health care system.

Dynamic axes of informed consent in Japan

Scholarship in cross-cultural bioethics routinely frames Japanese informed consent in contrast to informed consent in North America. This contrastive analysis foregrounds cancer diagnosis disclosure and physician paternalism as unique aspects of Japanese informed consent that deviate from American practices. Drawing on in-depth interviews with 15 Japanese medical professionals obtained during fieldwork in Japan from 2013 to 15, this article complicates the informed consent discourse beyond East-West comparisons premised on Anglo-American ethical frameworks. It expands professional perspectives to include nurses, medical social workers, clinical psychologists, and ethicists and it addresses informed consent for a broad range of conditions in addition to cancer. The results suggest that division of affective labor is an under-theorized dimension of informed consent that is perceived as at odds with principled demands for universal informed consent. These practical tensions are conceptualized as cultural differences, with Japan identified in terms of omakase as practical and supportive and the United States identified in terms of jiko kettei as principled and self-determining. These results have implications for the methodology of cross-cultural bioethics as well as for theories and practices of informed consent in both Japan and the United States. I conclude that responsible cross-cultural work in bioethics must begin from the ground up, incorporating all relevant stakeholder perspectives, attitudes, and experiences.

The system of ethical review of biomedical research in Lithuania: structure, peculiarities of functioning, ways of development

The analysis of information sources about the history and current peculiarities of the regulatory framework and functioning of the ethical review system for biomedical research in Lithuania are presented in this paper. The information used in this article has been obtained during the visit of Pakharyna S.V. to the Republic of Lithuania partially supported by the Fogarty International Center, National Institute of Health (NIH), US Grant No.R25 TW007084. It has been found that nowadays there is a two-level system of biomedical research ethical review in Lithuania. In accordance with the local regulatory requirements any biomedical research should be subjected to ethical review and can be started only after receiving the approval from the regional (for local studies) or central (for trials of medicines, medical devices or other multicenter studies) Ethics Committee. The peculiarities of the Lithuanian ethical review system are the legislative framework that is constantly updating and regulating all major types of biomedical research; studies with the broad ethical support and moderate cost of resources; transparency of the Lithuanian Bioethics work. As a result of our analysis a number of approaches for public discussion and implementation in practice of the Ukrainian system of biomedical research ethical review have been suggested.

Methodology and Myopia? Some Praise, a Problem, and a Plea.

In "A Conceptual Model for the Translation of Bioethics Research and Scholarship," Debra Mathews etal. aim to "begin an important discussion" about how to measure success in bioethics, and in doing so they set out a typology of bioethics research and scholarship with the arguably correct assumption that we cannot evaluate success in bioethics without first understanding what its goals are. I think the authors are correct in their claim that, in the current academic climate, having work in bioethics deemed a success is likely to hinge, in some way, on its being translated into practice and having impact. I want, however, to add a critical voice in the form of three considerations that I feel ought to be attended to before the work progresses further, the first being that the typology Mathews etal. propose is highly problematic. Although there is a burgeoning literature on "empirical bioethics" methodologies that blend empirical and conceptual work, the typology appears to ignore this.

Cultivating Synergy in Nursing, Bioethics, and Policy.

Nursing and bioethics have a lot in common because they share concerns about life and death, illness and health, the rights of individuals and communities, ethical patient care, health care delivery, and public health. Nurses and bioethicists contribute to ethical practice, ethics scholarship, and health policy-making in a variety of ways. Some nurses have bioethics education or experience, some bioethicists study or collaborate closely with nurses, and some of us proudly identify as both bioethicists and as nurses. Despite certain shared and interwoven aims, bioethicists and nurses often accomplish their goals in dissimilar ways, have diverse educational and training trajectories as well as distinct roles and responsibilities, and are viewed differently within health care organizations. Yet the work of bioethics and nursing can be, and in my view should more often be, synergistic. That synergism may be especially critical in the arena of health policy and ethics. Nurses can bring extraordinary insights and real-world experiences to the policy table but are not always considered essential contributors.