Bioethics, Volume 36, Issue 3, Page 328-335, March 2022.

Volume 19, Issue 11, November 2019, Page 9-12.

“Vulnerability” is a key concept for research ethics and public health ethics. This term can be discussed from either a conceptual or a practical perspective. I previously proposed the metaphor of layers to understand how this concept functions from the conceptual perspective in human research. In this paper I will clarify how my analysis includes other definitions of vulnerability. Then, I will take the practical‐ethical perspective, rejecting the usefulness of taxonomies to analyze vulnerabilities. My proposal specifies two steps and provides (...) a procedural guide to help rank layers. I introduce the notion of cascade vulnerability and outline the dispositional nature of layers of vulnerability to underscore the importance of identifying their stimulus condition. In addition, I identify three kinds of obligations and some strategies to implement them. This strategy outlines the normative force of harmful layers of vulnerability. It offers concrete guidance. It contributes substantial content to the practical sphere but it does not simplify or idealize research subjects, research context or public health challenges. (shrink)

In this article I examine several criticisms of the concept of vulnerability. Rather than rejecting the concept, however, I argue that a sufficiently rich understanding of vulnerability is essential to bioethics. The challenges of international research in developing countries require an understanding of how new vulnerabilities arise from conditions of economic, social and political exclusion. A serious shortcoming of current conceptions of vulnerability in research ethics is the tendency to treat vulnerability as a label fixed on a particular subpopulation. My (...) paper examines the role of this “label” metaphor in current statements of research ethics. In contrast to this prevailing “label” metaphor, my own positive account of vulnerability develops a dynamic way of understanding the structure of the concept of vulnerability based on the idea of “layers of vulnerability.” I examine several cases involving women, as they are sometimes labeled as a vulnerable population and sometimes not. My analysis demonstrates the essential role of this revised concept of vulnerability in bioethics and research ethics. (shrink)

Concern for human vulnerability seems to be at the heart of bioethical inquiry, but the concept of vulnerability is under-theorized in the bioethical literature. The aim of this article is to show why bioethics needs an adequately theorized and nuanced conception of vulnerability. We first review approaches to vulnerability in research ethics and public health ethics, and show that the bioethical literature associates vulnerability with risk of harm and exploitation, and limited capacity for autonomy. We identify some of the challenges (...) emerging from this literature: in particular, how to reconcile universal human vulnerability with a context-sensitive analysis of specific kinds and sources of vulnerability; and how to reconcile obligations to protect vulnerable persons with obligations to respect autonomy. We then briefly survey some of the theoretical resources available within the philosophical literature to address these challenges, and to assist in understanding the conceptual connections between vulnerability and related concepts such as harm, exploitation, needs, and autonomy. We also sketch out a taxonomy of sources and kinds of vulnerability. Finally, we consider the implications for policy evaluation of making vulnerability an explicit and central focus of bioethics. Our investigation is in the form of a broad survey motivating a research agenda rather than a detailed analysis. (shrink)

In exploring the concept of vulnerability, we do not begin with a blank slate. In research involving human subjects, ethics guidelines typically provide a rough definition of the concept. For example, the commentary on Guideline 13 in the International Ethical Guidelines for Biomedical Research Involving Human Subjects, issued by the Council for International Organizations of Medical Sciences (CIOMS), says that "vulnerable persons are those who are relatively (or absolutely) incapable of protecting their own interests. More formally, they may have insufficient (...) power, intelligence, education, resources, strength, or other needed attributes to protect their own interests" (CIOMS 2002). Because the CIOMS guidelines .. (shrink)

The coloniality of power is understood by Anibal Quijano as at the constituting crux of the global capitalist system of power. What is characteristic of global, Eurocentered, capitalist power is that it is organized around two axes that Quijano terms “the coloniality of power” and “modernity.” The coloniality of power introduces the basic and universal social classification of the population of the planet in terms of the idea of race, a replacing of relations of superiority and inferiority established through domination (...) with naturalized understandings of inferiority and superiority. In this essay, Lugones introduces a systemic understanding of gender constituted by colonial/modernity in terms of multiple relations of power. This gender system has a light and a dark side that depict relations, and beings in relation as deeply different and thus as calling for very different patterns of violent abuse. Lugones argues that gender itself is a colonial introduction, a violent introduction consistently and contemporarily used to destroy peoples, cosmologies, and communities as the building ground of the “civilized” West. (shrink)

Several foundational documents of bioethics mention the special obligation researchers have to vulnerable research participants. However, the treatment of vulnerability offered by these documents often relies on enumeration of vulnerable groups rather than an analysis of the features that make such groups vulnerable. Recent attempts in the scholarly literature to lend philosophical weight to the concept of vulnerability are offered by Luna and Hurst. Luna suggests that vulnerability is irreducibly contextual and that Institutional Review Boards (Research Ethics Committees) can only (...) identify vulnerable participants by carefully examining the details of the proposed research. Hurst, in contrast, defines the vulnerable as those especially at risk of incurring the wrongs to which all research ethics participants are exposed. We offer a more substantive conception of vulnerability than Luna but one that gives rise to a different rubric of responsibilities from Hurst's. While we understand vulnerability to be an ontological condition of human existence, in the context of research ethics, we take the vulnerable to be research subjects who are especially prone to harm or exploitation. Our analysis rests on developing a typology of sources of vulnerability and showing how distinct sources generate distinct obligations on the part of the researcher. Our account emphasizes that the researcher's first obligation is not to make the research participant even more vulnerable than they already are. To illustrate our framework, we consider two cases: that of a vulnerable population involved in international research and that of a domestic population of people with diminished capacity. (shrink)

This paper challenges the traditional account of vulnerability in healthcare which conceptualizes vulnerability as a list of identifiable subpopulations. This list of ‘usual suspects’, focusing on groups from lower resource settings, is a narrow account of vulnerability. In this article we argue that in certain circumstances middle-class individuals can be also rendered vulnerable. We propose a relational and layered account of vulnerability and explore this concept using the case study of cord blood (CB) banking. In the first section, two different (...) approaches to ‘vulnerability’ are contrasted: categorical versus layered. In the second section, we describe CB banking and present a case study of CB banking in Argentina. We examine the types of pressure that middle-class pregnant women feel when considering CB collection and storage. In section three, we use the CB banking case study to critique the categorical approach to vulnerability: this model is unable to account for the ways in which these women are vulnerable. A layered account of vulnerability identifies several ways in which middle-class women are vulnerable. Finally, by utilizing the layered approach, this paper suggests how public health policies could be designed to overcome vulnerabilities. (shrink)

The authors use the term “principlism” to refer to the practice of using “principles” to replace both moral theory and particular moral rules and ideals in dealing with the moral problems that arise in medical practice. The authors argue that these “principles” do not function as claimed, and that their use is misleading both practically and theoretically. The “principles” are in fact not guides to action, but rather they are merely names for a collection of sometimes superficially related matters for (...) consideration when dealing with a moral problem. The “principles” lack any systematic relationship to each other, and they often conflict with each other. These conflicts are unresolvable, since there is no unified moral theory from which they are all derived. For comparison the authors sketch the advantages of using a unified moral theory. (shrink)

Principle-based formulations of bioethical theory have recently come under increasing scrutiny, particularly insofar as they give prominence to personal autonomy. This essay critiques the dominant conceptualization of autonomy and urges an alternative formulation freed from the individualistic assumptions that pervade the prevailing framework. Drawing on feminist perspectives, I discuss the need for a vision of patient autonomy that joins relational experiences to individuality and acknowledges the influence of patterns of power and authority on the exercise of patient agency. Deficiencies in (...) the current models of science and social relations guiding medical practice are analyzed, particularly (1) the tendency to disregard the patients self-knowledge and (2) failure to recognize limitations on the generalizability of medical knowledge. Models of social relations such as mothering and friendship are explored to advance a conception of autonomy better suited to the practical activities of medicine. In conclusion, I consider how acknowledgement of the specificity and complexity of social relations can contribute to reconfiguration of other principles comprising the standard framework of bioethics, particularly beneficence, justice, and equality. (shrink)

This interdisciplinary volume explores how posthumanist approaches can illuminate current issues in bioethics and explores the relevance of these issues for the humanities, including questions of autonomy and authorship, and notions of ethical and juridical responsibility in the context of a changing understanding of subjectivity. With contributions from a variety of areas, including literature, philosophy, media and policy-making, the book outlines the historical and philosophical development of posthumanism, and current key questions in bioethics. It generates a dialogue between bioethical approaches (...) and the posthumanities, identifying ways in which posthumanist scholarship might be used to inform bioethical policy. The book also looks more speculatively at the future, and the potential implications of technological developments which are only beginning to emerge. It uses posthumanism to look critically at the humanism underpinning de-extinction science, considers the ways in which technology is re-framing our social and political imaginaries, and asks about the identification of future posthumans. (shrink)

Although ethical and justice arguments operate in two distinct levels—justice being a more specific concept—they can easily be conflated. A robust justification of ecological justice requires starting at the roots of justice, rather than merely giving, for example, an argument for why certain non-human beings have moral standing of some kind. Thus, I propose that a theory of ecological justice can benefit from a four-step justification for the inclusion of non-human beings into the community of justice, starting with Hume’s circumstances (...) of justice. I will further argue that the resulting theory of ecological justice should be biocentric—meaning that all living beings should be included into the community of justice, as they constitute a ‘community of fate’. (shrink)

The Principles of Biomedical Ethics by Tom L Beauchamp and James F Childress which is now in its fourth edition has had a great influence on the development of bioethics through its exposition of a theory based on the four principles: respect for autonomy; non-maleficence; beneficence, and justice (1). The theory is developed as a common-morality theory, and the present paper attempts to show how this approach, starting from American common-morality, leads to an underdevelopment of beneficence and justice, and that (...) the methods offered for specification and balancing of principles are inadequate. (shrink)

This chapter contains section titled: Critical Interrogations Feminism and Epistemology Whose Knowledge? Naturalizing, Reconfiguring, Situating Ecological Naturalism Bibliography.

Alongside globalization, the sense of vulnerability among people and populations has increased. We feel vulnerable to disease as new infections spread rapidly across the globe, while disasters and climate change make health increasingly precarious. Moreover, clinical trials of new drugs often exploit vulnerable populations in developing countries that otherwise have no access to healthcare and new genetic technologies make people with disabilities vulnerable to discrimination. Therefore the concept of vulnerability has contributed new ideas to the debates about the ethical dimensions (...) of medicine and healthcare. This book explains and elaborates the new concept of vulnerability in today s bioethics. Firstly, Henk ten Have argues that vulnerability cannot be fully understood within the framework of individual autonomy that dominates mainstream bioethics today: it is often not the individual person who is vulnerable, rather that his or her vulnerability is created through the social and economic conditions in which he or she lives. Contending that the language of vulnerability offers perspectives beyond the traditional autonomy model, this book offers a new approach which will enable bioethics to evolve into a global enterprise. This groundbreaking book critically analyses the concept of vulnerability as a global phenomenon. It will appeal to scholars and students of ethics, bioethics, globalization, healthcare, medical science, medical research, culture, law, and politics.". (shrink)

As the saying goes, “The road to hell is paved with good intentions.” And in the recent burst of clinical attention being paid to the needs of lesbian, gay, bisexual, and transgender patients, good intentions abound. But while this long‐overdue interest in LGBT health care aims to highlight important gaps and bring into relief serious issues in health care delivery for LGBT persons, such work can inadvertently reinforce both the marginalization of sexual minorities and the cultural norms related to sexuality, (...) gender identity, and the conventional family. To ensure that positive outcomes for LGBT patients are inextricably paired with those noble intentions, we advocate for a new, queer bioethics—a methodology of scholastic, bioethical, and critical scrutiny that not only addresses the needs of LGBT persons in health care settings but also considers the perspectives, histories, and feelings of such parties. (shrink)

The deeply entrenched, sometimes heated conflict between the disability movement and the profession of bioethics is well known and well documented. Critiques of prenatal diagnosis and selective abortion are probably the most salient and most sophisticated of disability studies scholars’ engagements with bioethics, but there are many other topics over which disability activists and scholars have encountered the field of bioethics in an adversarial way, including health care rationing, growth-attenuation interventions, assisted reproduction technology, and physician-assisted suicide. The tension between the (...) analyses of the disabilities studies scholars and mainstream bioethics is not merely a conflict between two insular political groups, however; it is, rather, also an encounter between those who have experienced disability and those who have not. This paper explores that idea. I maintain that it is a mistake to think of this conflict as arising just from a difference in ideology or political commitments because it represents a much deeper difference—one rooted in variations in how human beings perceive and reason about moral problems. These are what I will refer to as variations of moral psychology. The lived experiences of disability produce variations in moral psychology that are at the heart of the moral conflict between the disability movement and mainstream bioethics. I will illustrate this point by exploring how the disability movement and mainstream bioethics come into conflict when perceiving and analyzing the moral problem of physician-assisted suicide via the lens of the principle of respect for autonomy. To reconcile its contemporary and historical conflict with the disability movement, the field of bioethics must engage with and fully consider the two groups’ differences in moral perception and reasoning, not just the explicit moral and political arguments of the disability movement. (shrink)

Some 14 years ago, I published an article in which I identified a prime site for bioethicists to ply their trade: medical responses to requests for hormonal and surgical interventions aimed at facilitating transgendered people’s transition to their desired genders. Deep issues about the impact of biotechnologies and health care practices on central aspects of our conceptual system, I argued, were raised by how doctors understood and responded to people seeking medical assistance in changing their gender, and there were obviously (...) significant issues of regulation involved as well. Yet mainstream bioethics was conspicuous by its relative absence from the discussion. Here, I return to the matter and find that, while the conceptual issues are just as profound and their connection to health care practice and policy just as intimate, even as transgender issues have become much more socially visible, bioethical engagement with gender reassignment has increased only slightly. I set the little movement that has occurred against the backdrop of the situation as I saw it in 1998 and conclude, once again, by trying to make the bait for bioethicists inviting. (shrink)

: The feminist ethic of care has often been criticized for its inability to address four problems--the problem of exploitation as it threatens care givers, the problem of sustaining care-giver integrity, the dangers of conceiving the mother-child dyad normatively as a paradigm for human relationships, and the problem of securing social justice on a broad scale among relative strangers. We argue that there are resources within the ethic of care for addressing each of these problems, and we sketch strategies for (...) developing the ethic more fully. (shrink)

In the dialogue between Timothy F. Murphy and Cristina Richie about queer bioethics and queer reproduction in this journal, significant points of the emergent and extremely important discussions on lesbian, gay, bisexual, transgender and queer bioethics are raised. Richie specifies correctly that queer bioethics can either complement or contradict LGBT bioethics and the queer standpoint against heteroconformity and heterofuturity is decisive here. As the field of queer bioethics is such a recent and essential part of consideration for bioethics and as (...) it is still evolving, the objective of this intervention is to provide both an overview of important milestones of queer bioethics and to highlight that queer bioethics is not mono-logic and monolithic. To exemplify queer bioethic's ‘many-headed monsters’, queer reproduction is revisited and complemented by a European viewpoint. It is central to my argument and here I disagree with Richie that to be against heterofuturity does not necessarily mean to be against queer reproduction. However, I also argue that there are other reasons why queer reproduction should not be pursued at all costs. Finally, I discuss the most recent debates on race, class and citizenship, for example, queer necropolitics. These points still need to be addressed in queer bioethical agendas. (shrink)

This chapter contains section titled: Where We've Been Where We're Going Feminist Epistemology Counterstories Acknowledgments Notes References.

Internationally, there is an on-going dialogue about how to professionalize ethics consultation services . Despite these efforts, one aspect of ECS-competence that has received scant attention is the liability of failing to adequately capture all of the relevant moral considerations in an ethics conflict. This failure carries a high price for the least powerful stakeholders in the dispute. When an ECS does not possess a sophisticated dexterity at translating what stakeholders say in a conflict into ethical concepts or principles, it (...) runs the risk of naming one side's claims as morally legitimate and decrying the other's as merely self-serving. The result of this failure is that one side in a dispute is granted significantly more moral weight and authority than the other. The remedy to this problem is that ECSs learn how to expand the diagnostic moral lens they employ in clinical ethics conflicts. (shrink)