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)

It is commonly thought that exploitation is unjust; some think it is part of the very meaning of the word 'exploitation' that it is unjust. Those who think this will suppose that the just society has to be one in which people do not exploit one another, at least on a large scale. I will argue that exploitation is not unjust by definition, and that a society (such as Our own) might be fundamentally just while nevertheless being pervasively exploitative. I (...) do think that exploitation is nearly always a bad thing, and will try to identify the moral belief which makes most of us think it is. But I will argue that its badness does not always consist in its being unjust. (shrink)

oise Baylis, 1234 Le Marchant Street, Halifax, Nova Scotia, Canada B3H 3P7. Tel.: (902)-494–2873; Fax: (902)-494-2924; Email: francoise.baylis{at}dal.ca ' + u + '@' + d + ' '//--> . Abstract Recently, there has been a growing interest in public health and public health ethics. Much of this interest has been tied to efforts to draw up national and international plans to deal with a global pandemic. It is common for these plans to state the importance of drawing upon a well-developed (...) ethics framework and we argue that this framework should reflect the values and insights of feminist relational theory. More specifically, we argue that pandemic planning must be squarely situated in the larger realm of public health and that an ethics framework for public health will be one that recognizes the need to pay particular attention to the vulnerability of subpopulations lacking in social and economic power. We propose an ethics framework for public health that builds on the notions of relational personhood (including relational autonomy and social justice) and relational solidarity. In this way, we aim for a public health ethics that, as appropriate, promotes the public interest and the common good. CiteULike Connotea Del.icio.us What's this? (shrink)

This collection of original essays explores the social and relational dimensions of individual autonomy. Rejecting the feminist charge that autonomy is inherently masculinist, the contributors draw on feminist critiques of autonomy to challenge and enrich contemporary philosophical debates about agency, identity, and moral responsibility. The essays analyze the complex ways in which oppression can impair an agent's capacity for autonomy, and investigate connections, neglected by standard accounts, between autonomy and other aspects of the agent, including self-conception, self-worth, memory, and the (...) imagination. (shrink)

In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions—the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the bioethics literature, which (...) focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people’s ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents’ decisions indirectly—they structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decision-making, we need to pay attention to the social structure that frames people’s decision. (shrink)

Despite broad agreement that the vulnerable have a claim to special protection, defining vulnerable persons or populations has proved more difficult than we would like. This is a theoretical as well as a practical problem, as it hinders both convincing justifications for this claim and the practical application of required protections. In this paper, I review consent-based, harm-based, and comprehensive definitions of vulnerability in healthcare and research with human subjects. Although current definitions are subject to critique, their underlying assumptions may (...) be complementary. I propose that we should define vulnerability in research and healthcare as an identifiably increased likelihood of incurring additional or greater wrong. In order to identify the vulnerable, as well as the type of protection that they need, this definition requires that we start from the sorts of wrongs likely to occur and from identifiable increments in the likelihood, or to the likely degree, that these wrongs will occur. It is limited but appropriately so, as it only applies to special protection, not to any protection to which we have a valid claim. Using this definition would clarify that the normative force of claims for special protection does not rest with vulnerability itself, but with pre-existing claims when these are more likely to be denied. Such a clarification could help those who carry responsibility for the protection of vulnerable populations, such as Institutional Review Boards, to define the sort of protection required in a more targeted and effective manner. (shrink)

Vulnerability is one of the least examined concepts in research ethics. Vulnerability was linked in the Belmont Report to questions of justice in the selection of subjects. Regulations and policy documents regarding the ethical conduct of research have focused on vulnerability in terms of limitations of the capacity to provide informed consent. Other interpretations of vulnerability have emphasized unequal power relationships between politically and economically disadvantaged groups and investigators or sponsors. So many groups are now considered to be vulnerable in (...) the context of research, particularly international research, that the concept has lost force. In addition, classifying groups as vulnerable not only stereotypes them, but also may not reliably protect many individuals from harm. Certain individuals require ongoing protections of the kind already established in law and regulation, but attention must also be focused on characteristics of the research protocol and environment that present ethical challenges. (shrink)

ABSTRACT People who are paid to provide basic care for others are frequently undervalued, exploited and expected to reach often unrealistic standards of care. I argue that appropriate social recognition, support and fair pay for people who provide care for those who are disabled, frail and aged, or suffering ill health that impedes their capacity to negotiate daily activities without support, depends on a reconsideration of the paradigm of the citizen or and moral agent. I argue that by drawing on (...) the ideas of human vulnerability and dependency as central to our personhood, a more realistic conception of selves, citizens and persons can be developed that better recognises the inevitability of human dependency and the social value of care work. I also indicate the significance of this vulnerability‐focussed view for ethical evaluation of the emotional aspects of care relationships. (shrink)

ABSTRACT As bioethics emerged in the 1960s and 1970s and began to have enormous impacts on the practice of medicine and research – fuelled, by broad socio‐political changes that gave rise to the struggle of women, African Americans, gay men and lesbians, and the antiauthoritarian impulse that characterised the New Left in democratic capitalist societies – little attention was given to the question of the ethics of public health. This was all the more striking since the core values and practices (...) of public health, often entailing the subordination of the individual for the common good, seemed opposed to the ideological impulses of bioethics. Of what relevance is autonomy‐focused bioethics for public health, with its mix of justifications including those that are either implicitly or explicitly paternalistic or that seek to impose strictures on individuals and communities in the name of collective welfare? To examine the deep divide between the central commitments of bioethics and the values that animate the practice of public health, we focus on a series of controversies implicating the concepts of privacy, liberty, and paternalism. Recognising the role of moral values in decision‐making was a signal contribution of bioethics in its formative period. Over the past three decades a broad array of perspectives emerged under the rubric of bioethics but individualism remains central. As we commence the process of shaping an ethics of public health, it is clear that bioethics is the wrong place to start when thinking about the balances required in defence of the public's health. (shrink)

Vulnerability does not mean much for our contemporary morality. It is antithetical to our emphasis on individualism and rationality; it requires that we attend to the body and to our feelings. Yet only by recognizing the depth and breadth of our vulnerability can we affirm our humanity.

In this critique, Martha Nussbaum argues that our dominant theories of development have given us policies that ignore our most basic human needs for dignity and self-respect.

Though much progress has been made on inclusion of non-pregnant women in research, thoughtful discussion about including pregnant women has lagged behind. We outline resulting knowledge gaps and their costs and then highlight four reasons why ethically we are obliged to confront the challenges of including pregnant women in clinical research. These are: the need for effective treatment for women during pregnancy, fetal safety, harm from the reticence to prescribe potentially beneficial medication, and the broader issues of justice and access (...) to benefits of research participation. Going forward requires shifting the burden of justification from inclusion to exclusion and developing an adequate ethical framework that specifies suitable justifications for excluding pregnant women from research. (shrink)

It is commonly thought that exploitation is unjust; some think it is part of the very meaning of the word ‘exploitation’ that it is unjust. Those who think this will suppose that the just society has to be one in which people do not exploit one another, at least on a large scale. I will argue that exploitation is not unjust by definition, and that a society might be fundamentally just while nevertheless being pervasively exploitative. I do think that exploitation (...) is nearly always a bad thing, and wul try to identify the moral belief which makes most of us think it is. But I will argue that its badness does not always consist in its being unjust. (shrink)

Book reviewed in this article: Protecting The Vulnerable: A Reanalysis of Our Social Responsibilities. By Robert E. Goodin. Chicago: University of Chicago Press.

Until recently, philosophers tended to be suspicious of the concept of need. Contributors to this volume build on recent work establishing its philosophical importance. David Wiggins, Gillian Brock and John O'Neill propose remedies for some mistakes made in ignoring or marginalising need, for example in need-free theories of rationality or justice. Christopher Rowe, Soran Reader and Sarah Miller highlight insights that emerge when the concept of need is explored through Plato, Aristotle and Kant - and others that emerge when historical (...) work is seen through the lens of need. Jonathan Lowe and Garrett Thomson consider the role need plays in the philosophies of action and mind. Bill Wringe, David Braybrooke and Sabina Alkire debate how our obligations relating to need are best understood and articulated, and how we can best ensure they are fulfilled, exploring for example how talk of need is related to talk of rights, well-being or capability. (shrink)

This book develops some of the most important themes of Sen's works over the last decade. He argues in a rich and subtle approach that we should be concerned with people's capabilities rather than their resources or welfare.

The realities of long‐term care call for a refurbished, concrete concept of autonomy that systematically attends to the history and development of persons and takes account of the experiences of daily living.

This article summarizes some of the results of the BIOMED II project “Basic Ethical Principles in European Bioethics and Biolaw” connected to a research project of the Danish Research Councils “Bioethics and Law”. The BIOMED project was based on cooperation between 22 partners in most EU countries. The aim of the project was to identify the ethical principles of respect for autonomy, dignity, integrity and vulnerability as four important ideas or values for a European bioethics and biolaw. The research concluded (...) that the basic ethical principles cannot be understood as universal everlasting ideas or transcendental truths but they rather function reflective guidelines and important values in European culture. The method of the research was conceptual, philosophical analysis of the cultural background of the four values or normative ideas that people use and find important in their existence. Moreover, this was combined with analysis of empirical legal material and policy documents. Also, a number of qualitative interviews with relevant experts were carried out. Another important result of the BIOMED project was the partner's Policy Proposals to the European Commission, the Barcelona Declaration, unique as a philosophical and political agreement between experts in bioethics and biolaw from many different countries. The Policy Proposals are reprinted here at the end of the article. (shrink)

Imagine you are walking down a city street. It is windy and raining. Amidst the bustle you see a young woman. She sits under a railway bridge, hardly protected from the rain and holds a woolen hat containing a small number of coins. You can see that she trembles from the cold. Or imagine seeing an old woman walking in the street at dusk, clutching her bag with one hand and a walking stick with the other. A group of male (...) youths walk behind her without overtaking, drunk and in the mood for mischief. It doesn't need an academic to say what vulnerability is. We can all see it, much more often than we care to. (shrink)

What makes individuals, groups, or even entire countries vulnerable? And why is vulnerability a concern in bioethics? A simple answer to both questions is that vulnerable individuals and groups are subject to exploitation, and exploitation is morally wrong. This analysis is limited to two areas. First is the context of multinational research, in which vulnerable people can be exploited even if they are not harmed, and harmed even if they are not exploited. Second is the situation of women, who are (...) made vulnerable in cultural settings or in entire countries in which they are oppressed and powerless. (edited). (shrink)

This paper advances a new criterion of a vulnerable population in research. According to this criterion, there are consent-based and fairness-based reasons for calling a group vulnerable. The criterion is then applied to the case of people with serious illnesses. It is argued that people with serious illnesses meet this criterion for reasons related to consent. Seriously ill people have a susceptibility to “enticing offers” that hold out the prospect of removing or alleviating illness, and this susceptibility reduces their ability (...) to safeguard their own interests. This explains the inclusion of people with serious illnesses in the Belmont Report’s list of populations needing special protections, and supports the claim that vulnerability is the rule, rather than the exception, in biomedical research. (shrink)

Most recent thinking about thevulnerability of research subjects uses a``subpopulation'' focus. So conceived, theproblem is to work out special standards forprisoners, pregnant women, the mentally ill,children, and similar groups. In contrast, an``analytical'' approach would identifycharacteristics that are criteria forvulnerability. Using these criteria, one couldsupport a judgment that certain individuals arevulnerable and identify needed accommodationsif they are to serve as research subjects.Seven such characteristics can be evident inchildren: they commonly lack the capacity tomake mature decisions; they are subject to theauthority of (...) others; they (and their parents)may be deferential in ways that can maskunderlying dissent; their rights and interestsmay be socially undervalued; they may haveacute medical conditions requiring immediatedecisions not consistent with informed consent;they may have serious medical conditions thatcannot be effectively treated; and they (andtheir parents) may lack important sociallydistributed goods. Each of thesevulnerabilities can call for special care inthe design and implementation of researchprotocols. (shrink)