Our motivation for proposing a special issue of IJFAB on vulnerability is twofold. First, there is growing interest in the concept of vulnerability within both bioethics and feminist theory. Reflecting this interest, this special issue provides a forum for exploring the relevance for bioethics of feminist perspectives on vulnerability. Second, despite growing recognition within bioethics of the moral significance of vulnerability, the concept remains under-theorized in bioethical (and wider philosophical) discourse. Questions that are central to current debates but that require further theoretical analysis include the following: What is vulnerability and what are the sources of vulnerability? What duties are owed to the vulnerable, and by whom? How can we respond to vulnerability while also respecting autonomy and promoting resilience? And should vulnerability be a foundational concept in bioethics, alongside autonomy, justice, beneficence, and nonmaleficence? The articles in this special issue address these and other questions from a range of theoretical perspectives.
Within bioethics, vulnerability has received the most attention in relation to research ethics. Protection of vulnerable research participants has been a major concern since the publication of the Nuremberg Code. Although the Code did not specifically mention vulnerability, by mandating informed consent it sought to mitigate the general vulnerability of patients asked to participate in research. The Belmont Report (National Commission for the Protection of Human Subjects of Biomedical and Behavioural Research 1979) explicitly introduced the concept [End Page 1] of "vulnerable groups," paving the way for special considerations directed toward those whose capacities to consent freely might be compromised, or who are dependent or easily exploited. These two early codes set in train a tension about the scope of the concept that continues to resonate in current debates. On the one hand, all research participants are potentially vulnerable and need the protections offered by measures such as the requirement to give uncoerced, informed consent. On the other hand, vulnerability is used as a marker to identify individuals or groups who require extra protections or exclusion from research altogether. The concept of vulnerability thus seems to be both universal and particular in scope. When applied universally, however, vulnerability seems to lose its moral purchase, while its use in identifying only some individuals or groups as especially vulnerable risks stereotyping and paternalism (Luna 2009).
In other areas of bioethics such as clinical and public health ethics, discussions of vulnerability are less detailed. The European Commission has identified vulnerability as one of its Basic Ethical Principles in Bioethics and Biolaw (along with autonomy, dignity, and integrity), and vulnerability is identified in Article 8 of UNESCO's Universal Declaration on Bioethics and Human Rights. These documents refer both to the universal vulnerability of the human condition, and single out individuals or groups who are especially vulnerable. Within public health ethics, vulnerability has come to be used as a marker for increased risk of ill health, where vulnerable populations are those who, by virtue of socioeconomic or other disadvantage, have higher burdens of morbidity and mortality than those who are better off. While there are accounts of what is owed the vulnerable within public health ethics (see, for example, Brock 2002), there is no agreement about how to identify the vulnerable or develop responses to vulnerability that avoid the discrimination and paternalism identified as problematic in research ethics. Thus within bioethics, scholars are increasingly using the concept of vulnerability, while at the same time, there is confusion about its scope and little consensus about how to reconcile the universal notion of vulnerability with that of the especially vulnerable.
These tensions reflect a more general ambiguity between two different ways of understanding the concept of vulnerability, which is evident in both the philosophical literature and in feminist theory. On the one hand, some theorists understand vulnerability as "a universal, inevitable, enduring aspect of the human condition" (Fineman 2008, 8). To be vulnerable is to be fragile and susceptible to wounding and to suffering; this susceptibility is an ontological condition of our corporeal humanity. It is because we are embodied that human beings have "an [End Page 2] organic propensity to disease and sickness, that death and dying are inescapable, and that aging bodies are subject to impairment and disability" (Turner 2006, 29). Despite their theoretical differences, Butler (2004, 2009), MacIntyre (1999), Ricoeur (2007), and Shildrick (2002) all stress the universal, ontological, corporeal dimensions of vulnerability. On the other hand, other theorists, such as Goodin (1985), Macklin (2003), and Hurst (2008), understand vulnerability as susceptibility to harmful wrongs, exploitation, or threats to one's interests or autonomy. Although everyone is potentially vulnerable to such threats, the especially vulnerable are those who, due to inequalities of power, dependency, capacity, or need, are less able than others to protect themselves. Within feminist theory, Kittay's pioneering work on dependency and cognitive disability (1999, 2011) has drawn attention to the moral obligations and duties of justice owed both to persons who are vulnerable in this sense, and to their carers.
One important challenge for bioethicists, philosophers, and feminist theorists interested in developing a more robust theoretical analysis of vulnerability is to integrate these different dimensions of the concept. While the idea that vulnerability is a universal feature of our embodied humanity is important for bioethics, it is also crucial not to lose sight of the contingency and context-specificity of many kinds of vulnerability, and their origin in social and political structures, rather than in biological forces. Another important challenge is to develop an account of the duties involved in responding to vulnerability that avoids stereotyping and paternalism and is consistent with the principle of respect for individual autonomy.
In their opening article, Rogers, Mackenzie, and Dodds discuss these challenges in more detail. They argue that although the concept of vulnerability is central to bioethics, current accounts fail to resolve the tension between universal and context-specific interpretations of vulnerability. Further, the connections between vulnerability and related concepts such as harm, exploitation, needs, and autonomy have not been adequately theorized. After identifying problems with the way that vulnerability is conceptualized in both research and public health ethics, Rogers, Mackenzie, and Dodds survey the philosophical literature on vulnerability. They argue that an adequate analysis of vulnerability should be able to reconcile vulnerability with autonomy, that relational accounts of autonomy offer the most promising way to achieve this, and that responses to vulnerability should not only minimize harm, but also be autonomy-supporting. Rogers, Mackenzie, and Dodds then propose their own taxonomy of vulnerability as a way of integrating the universal and context-specific interpretations of vulnerability, [End Page 3] distinguishing different sources (inherent, situational, and pathogenic) and states (occurrent and dispositional) of vulnerability. The concept of pathogenic vulnerability refers to vulnerability that is caused by morally dysfunctional social relations or unjust social and political structures, or when interventions aimed at ameliorating vulnerability instead exacerbate it. The final part of their article examines two different kinds of policy interventions, one of which generates pathogenic vulnerability, while the other mitigates vulnerability in a way that fosters autonomy.
Elizabeth Ben-Ishai's article picks up on a number of the themes canvassed in the article by Rogers, Mackenzie, and Dodds, in the context of an empirical study of Insite, North America's only supervised injection facility for illicit drug users. Ben-Ishai argues that Insite, a publicly funded facility, provides an example of a policy intervention that responds to vulnerability by reshaping the meaning of dependence and conferring recognition upon users, thereby fostering users' autonomy. She suggests that by conceiving of Insite as a health-care facility and addiction as disease, advocates evoke a sense of shared, human vulnerability among the nonusing public and users, garnering considerable support for the site. However, Ben-Ishai cautions that the medicalized discourse surrounding Insite and the appeal to universal human vulnerability may obscure the fact that drug users' vulnerabilities are primarily the result not of "disease," but of stigma and criminalization. Responding to Fineman's account of vulnerability as an "inevitable, enduring aspect of the human condition," Ben-Ishai argues that vulnerability analysis must emphasize not merely a naturalized conception of vulnerability, but also the socially constructed nature of human beings' experiences of vulnerability.
Ben-Ishai's insistence on the socially constructed nature of many kinds of vulnerability is echoed in the following two articles, about public health ethics and research ethics by Ruth Macklin and Verina Wild. Macklin draws on analyses of vulnerability in the work of Hurst (2008) and Luna (2009), but seeks to extend these analyses beyond research ethics to public health ethics, focusing specifically on the impact of gender inequalities on women's health. Using a social and cultural determinants of health approach, she argues that "a feminist approach to vulnerability must take account of women's lives outside the confines of research and health care to explore circumstances in which culture, custom, tradition, and laws" make women in many developing countries vulnerable to ill health and to wrongful harms. Starting from a definition of vulnerability as a "relative inability to protect one's interests," she argues that a theory of vulnerability must specify [End Page 4] the characteristics or circumstances that render individuals or groups vulnerable to particular harms or wrongs; identify what might be done to mitigate or prevent those harms or wrongs; and determine who is responsible for doing so. She then applies this approach to three examples of cultural practices that render women vulnerable—early marriage, honor killings, and dowry deaths. In each case, she specifies the different layers of vulnerability created by these practices, outlines what could be done to mitigate this vulnerability, and identifies the agents or institutions that are primarily responsible for doing so. Macklin concludes by suggesting that successful collective efforts to address women's vulnerability provide examples of "relational solidarity."
Wild also focuses on the theme of women's vulnerability, Her article contributes to the long-standing debate in feminist bioethics on the exclusion of pregnant women from research. Wild argues that, despite the reversal of an earlier blanket exclusion of women from research, they remain an under-represented group and are usually included on lists of "the vulnerable," along with children, people with intellectual disabilities, prisoners, the socioeconomically disadvantaged, and so forth. Wild notes that this exclusion seems to be based upon a view that pregnant women either lack decisional capacity or are at increased risk of exploitation. Wild explores both of these possibilities from the perspective of the fetus and the woman. She takes the position that the interests of the fetus cannot be separated from that of the woman, and that a pregnant woman should be seen as a "double unit" for whom the woman has decisional capacity. She argues that there is nothing about pregnancy per se that affects women's decisional capacity, or that puts them at increased risk of exploitation. Wild then offers her own account of vulnerability as increased risk of harm for potential participants, assessed on a case-by-case basis. She thus rejects any preemptive labeling of individuals or groups as vulnerable, and charges researchers with responsibility for identifying and addressing vulnerabilities as they arise in the context of specific research projects.
The next group of articles by Jessica Cadwallader, Laura Guidry-Grimes and Elizabeth Victor, and Robyn Bluhm explore the role of vulnerability with regard to health and well-being. All three papers engage with questions of stereotyping and the vulnerabilities that arise from social expectations or labeling. In her article, Cadwallader argues that feminist theories of embodiment can help us to better understand the suffering caused by misrecognized or unrecognized vulnerabilities. Cadwallader develops the concept of "(un)expected suffering," by which she refers both to subjective suffering that is not recognized within the [End Page 5] structures of traditional medical practice and to those situations in which suffering is medically expected, but is not experienced by the individual in question. She identifies a mismatch between the objective view of traditional medicine about what constitutes pathology and individuals' own experiences of vulnerability and suffering. Using the concept of "bodily tolerances," Cadwallader argues that these tolerances are formed by individuals' ways of being in the world, and are the unique product of their lived and embodied histories. Tolerances mark both an individual's bodily capabilities and the limits of those capabilities, limits that are associated with specific vulnerabilities, and the transgression of which leads to suffering. The notion of bodily tolerances helps to explain the lack of recognition of vulnerability and suffering, especially where an individual's bodily tolerances do not conform to those specified by medicine in relation to a normative ideal of the body. Cadwallader also indicates how her approach can engage with broader sociopolitical questions about the recognition of vulnerability.
The focus of Guidry-Grimes and Victor's article is to show how medical diagnostic labels, particularly in mental health, can compound the vulnerability of individuals and social groups. Guidry-Grimes and Victor distinguish between first-order vulnerability and compounded vulnerability. First-order vulnerability is deficiency along any of the six dimensions of well-being identified by Powers and Faden (2006): health, personal security, practical reason, respect, attachment, and self-determination. Compounded vulnerabilities arise when systemic or institutional conditions intersect in a manner that creates additional barriers to an individual's ability to develop or achieve well-being. So how can diagnostic labels in mental health give rise to compounded vulnerability? In answering this question, Guidry-Grimes and Victor draw on Hacking's (1999) notion of an interactive kind as a kind of thing that interacts with, and is changed by, the classification it is given. They argue that diagnostic labels are interactive in this sense; they generate feedback loops between the person classified and the classification, which change the way people act and think about themselves. For example, a person diagnosed with schizophrenia or cancer responds to this classification, as do others within the surrounding social and institutional setting, changing their behavior in light of the classification. Guidry-Grimes and Victor suggest that when biologically based diagnostic labels are associated with oppressive stereotypes and stigma, or are based on normalizing assumptions, these labels can compound the person's first-order vulnerability. To illustrate how diagnostic classifications can have this effect, Guidry-Grimes and Victor focus on the example of Premenstrual Dysphoric [End Page 6] Disorder, which they claim is an interactive mental illness classification that compounds the vulnerabilities of menstruating women.
Bluhm turns her attention to the concepts of health and disease, arguing that investigating the vulnerability associated with ill health offers a new way of understanding the relationship between health and illness. Most philosophical accounts of health and disease take these to be mutually exclusive opposites, to the point of defining one in terms of the absence of the other (i.e., to be healthy is to be free of disease, while to have a disease or illness is to lack health). In addition, health is taken to be the norm, with ill health seen as a weakness or deviation from that norm. Bluhm argues that in order to think health is our natural normal state, we must deny vulnerability to illness. Such an approach, however, does not allow for the blurring that occurs between health and illness, which are not always experienced as mutually exclusive states. There are, for example, accounts of individuals who identify as healthy, despite the presence of severe or chronic diseases or disability. We can start to account for these experiences if we understand vulnerability to entail a certain openness to change. The reactions and adjustments made by individuals in response to ill health allow for a recalibration of goals and the reaching of a new equilibrium of health within illness. Thus, Bluhm uses the concept of vulnerability to offer a nuanced understanding of the relationship between health and illness and to show how these two states can coexist.
Park McArthur's first-personal reflection on the experience of adult dependency reiterates themes in Cadwallader's article concerning the importance of understanding each individual's embodied perspective. It also illustrates Bluhm's conception of vulnerability as involving a certain openness to change. In describing her dependency on her parents and the daily care they provide both her and her sister, she says "each member of our family recognizes dependent adulthood not as an infantilizing throwback, but as an opening up of the possibilities found in demonstrative, quantifiable care." McArthur's reflections extend from her own experience of physical disability, dependency, and vulnerability to their wider social significance. In acknowledging that her life as a dependent adult relies upon an extensive network of social support that is not available to many, and that her carers succeed in combining loving care with respect for her autonomy, she admits that she is "one of the few dependent adults who receives the care I need, day-to-day, month-to-month, year-to-year." To provide this quality and level of care to all who need it, she suggests, requires "rethinking care at a massive scale as an urgent necessity, one that requires us to dignify the critical nature of caretaking." [End Page 7]
As we brought the special issue together, UNESCO published its Report of IBC on the Principle of Respect for Human Vulnerability and Personal Integrity (UNESCO 2011), which attempts to flesh out the concept of special vulnerability highlighted in Article 8 of the Universal Declaration on Bioethics and Human Rights. Article 8 (Respect for Human Vulnerability and Personal Integrity) states:
In applying and advancing scientific knowledge, medical practice and associated technologies, human vulnerability should be taken into account. Individuals and groups of special vulnerability should be protected and the personal integrity of such individuals respected.
In its report, the International Bioethics Committee (IBC) claims that recognition of vulnerability may act as a bridge to greater solidarity, and that a commitment to respect for vulnerability is a necessary constituent of the political responsibility of states. The Report focuses on special vulnerability, offering a series of case examples to assist with the identification of contexts and situations in which individuals or groups may find themselves particularly vulnerable. While adopting a broadly contextual approach to identifying vulnerability, the Report does nominate children and females (adult and children) as groups that are especially vulnerable. To conclude the special issue, we have included three commentaries on the Report.
In his commentary, Donald Evans, who chaired the IBC group responsible for the Report, provides some general background information about the Report and its aims. He also notes that a significant proportion of the case examples focus on the treatment of women in health-care delivery, research, and the application of new biotechnologies. Picking up on the theme of gender inequality discussed in Macklin's article, he explains that the reason for identifying women as an especially vulnerable group is that "women find themselves at the vortex of a large number of forces, each of which produces special vulnerabilities."
In "labeling" (Luna 2009) women and children as vulnerable, the Report continues the tradition of the Belmont Report of singling out groups for extra protections. In her commentary, Mary C. Rawlinson is highly critical of the Report's labeling of women as especially vulnerable. She notes that not only is it odd to label half the human race a special class, but that this approach fails to identify and address the structural and institutional sources of women's vulnerability. Rawlinson is also critical of the way the Report limits its focus to vulnerability arising from biomedical and scientific research, rather than addressing "broader issues of public health, social justice, and environmental justice." Both [End Page 8] problems, she charges, indicate that the Report assumes a "universal ethical subject" that is implicitly coded as masculine.
In her commentary, Carolyn Ells endorses the Report's attempt to identify contextual features that lead to increased vulnerability, noting their resonance with feminist concerns about oppression. While acknowledging that UNESCO's primary focus is on the responsibilities of states to mitigate vulnerability, she urges health-care professionals and organizations to reflect on the strategies they can adopt to address the special vulnerabilities of their patients arising from social, legal, and environmental determinants.
Our aims in compiling this special issue were to explore the relevance for bioethics of feminist perspectives on vulnerability and to contribute to the theoretical understanding of vulnerability. Several significant themes emerge from the articles collected here. First, that it is important to move beyond the dichotomy between universal and particular vulnerability, and to develop a nuanced understanding of the different kinds and multiple sources of vulnerability. Of crucial importance is the need to recognize that many kinds of vulnerability are caused by social, political, and cultural factors. Second, the articles explore the relationship between vulnerability, autonomy, and paternalism. A number of authors argue that vulnerability is compatible with autonomy and point to ways of responding to vulnerability that avoid rather than entrench paternalism. Third, some of the authors emphasize the positive dimensions of vulnerability. Although being vulnerable exposes one to harm, it also opens up the possibility of change, of developing new ways of being in the world and relating to those with whom we are interdependent. The articles in this special issue clearly demonstrate that the importance and relevance of vulnerability for bioethics extend far beyond questions of consent and exploitation in research. In so doing, they also illustrate the contributions that feminist perspectives can bring to bioethics.
Wendy Rogers is Professor of Clinical Ethics at Macquarie University, Sydney, where she holds a joint appointment between the Philosophy Department and the Australian School of Advanced Medicine. Her current research interests include developing an account of vulnerability relevant to research and public health ethics, and the ethics and epistemology of surgical research and innovation.
Catriona Mackenzie is Professor of Philosophy and Director of the Research Centre for Agency, Values and Ethics at Macquarie University, Sydney, Australia. Her publications include, as co-editor, Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self (2000), Practical Identity and Narrative Agency (2008), and Emotions, Imagination and Moral Reasoning (2012), as well as numerous journal articles on a wide range of topics in feminist philosophy, moral psychology, ethics, and applied ethics. Her current research includes projects on autonomy, on the moral and political obligations arising from vulnerability, and on narrative conceptions of the self and agency.
Susan Dodds is Dean of the Faculty of Arts and Professor of Philosophy at the University of Wollongong. She has published extensively in feminist bioethics and political philosophy. Her recent work has focused on two areas, on deliberative democratic approaches to public policy surrounding ethically contentious issues in bioethics, and on the ethical and political obligations arising from recognition of dependency. She is co-editor (with Rosie Tong and Anne Donchin) of Linking Visions: Feminist Bioethics, Human Rights, and the Developing World (2004).