by Martha Albertson Fineman
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Both law and bioethics are disciplines concerned with establishing principles, norms, and values to govern those subjects and situations within their jurisdictions. The rules that emerge from discussions about necessary ethical principles must be considered just, and must also clearly define appropriate institutional practices and individual behavior.
The primary subject of both law and bioethics is the human being. While the social and professional roles of the lawyer (and/or legislator and judge) and the bioethicists may be different, both professions are concerned with human beings and the societies in which they live. Therefore, the fundamental question for both disciplines has to be: “What does it mean to be human?” This question must be answered before a determination of what is just can be made in defining professional ethics and responsibility.
In law, vulnerability has been developed as a term of art, with a particular and specific meaning. Therefore, a legal theorist immersed in vulnerability theory would respond: “To be human is to be vulnerable.” Vulnerability is the universal, continuous human condition. It is the ultimate characteristic that defines what it means to be human.
- Bioethics and Vulnerability
Bioethics has also recognized human vulnerability. In the 1979 Belmont Report, which is acknowledged as a landmark in the development of bioethics, the Commissioners established the three ethical principles that should underlie research involving human subjects: respect for persons, beneficence, and justice. When placed in the context of research practice, these principles mandated researchers ensure the informed consent of participants, make an assessment of the risks and benefits, and be fair in the selection of research subjects.
Vulnerability emerged as a “special” consideration in the context of the fair selection of research subjects. The Report indicated that a “special” injustice could result, even when subjects generally were selected fairly. Particularly vulnerable subjects (or populations) were identified as “racial minorities, the economically disadvantaged, the very sick, and the institutionalized.” These vulnerable groups were to be specially protected or excluded from research because of their “dependent status and compromised capacity for free consent.”
In the final decades of the 20th century, the groups deemed in need of special protection grew and the consideration of vulnerability was broadened from a specific category applied only to the fair selection of research subjects. Protection of the “vulnerable person” was mandated in the guidelines established by the Council for International Organizations of Medical Sciences in 1991. Vulnerability became a “fundamental value,” incorporated into the core principle of respect for the person. In 2005, the United Nation’s Universal Declaration on Bioethics and Human Rights elevated consideration of vulnerability in both its general and special manifestations, to a Principle. Article 8 provided:
“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.”
However, in this evolution of vulnerability in bioethics from special consideration to fundamental value to ethical principle, vulnerability is not clearly or consistently defined, either as a general or special characteristic. Further, arguments abound over just who should constitute a “vulnerable population” and why.
In Vulnerability: Challenging Bioethics, bioethicist Henk ten Have addressed the confusion that has resulted in the absence of a definitive understandings of what human vulnerability means for bioethics. He noted that there are some areas of general agreement. For example, the idea that there are different types of vulnerability is widely accepted. Consistent with the history of the use of the concept of vulnerability in bioethics, these differences are primarily considered distinct, attached to specific populations requiring special consideration or treatment. There seems also to be some agreement that vulnerability is a negative condition or position. It is narrowly understood as an openness to physical, social, or emotional harms. In addition, since special vulnerability is by definition not universal, it can be attributed to varying contexts and sources.
The search in bioethics seems to be to identify who is so vulnerable as to need special protection. What characteristics make an individual or population especially vulnerable and why? The ethical response from a researcher would then be to remove or lessen an individual’s vulnerability, protecting them even if that means excluding them from the study.
Some areas of disagreement within bioethics grow out of these sites of agreement, particularly the conclusion that there are multiple forms or types of vulnerability. Some commentators have suggested that because there are now so many designated vulnerable populations, the concept has no meaning whatsoever and should be abandoned. Others are concerned because they feel the label of vulnerability, which identifies a group at heightened risk of harm, inevitably stigmatizes the individuals to whom it is applied. A related area of debate centers on the question of the sources of vulnerability – can what causes an individual or group to be vulnerable be eradicated or lessened? Attempting to navigate this definitional complexity are those who suggest that we also think of vulnerability as incremental or episodic, using terms such as “layered,” or “situational,” or “pathogenic” to modify the concept.
Ten Have attempts to bring some clarity and order to these bioethical discussions. He does so by tracing the various ways the concept has been used to indicate a deficit in explaining an individual’s perceived weakness or fragility. He identifies six distinct categories of vulnerability circulating in bioethics. The first category is “vulnerability as “natural” imperfection.” Due to the limitations of our physical bodies, human beings are naturally defenseless in many circumstances. This meaning derives from the Latin root of vulnerability, which is “vulnus – to wound. This vulnerability, arising from the body, is universal and constant. Ten Have labels this ontological or anthropological vulnerability – it applies to every body. The second category — vulnerability as arising from bodily corruption — retains the idea of a universal physical body, but suggests that there may be alterations to that body — differences resulting from corruption by which some individual bodies are degraded and weakened. These variations may be attributed to fate or luck, but also may be the product of individual choice. An example of the latter is the link between the choice to smoke and lung cancer.
In this second category a split between the mind and the body is introduced, along with the idea of individual choice. However, the focus is still on an abstract, objective body, even if it is seen as containing two elements. The four remaining categories of vulnerability ten Have lists all begin with the ontological or objective corporeal body, but venture beyond that body to look at the social dimensions or implications of vulnerability.
In these last four categories, vulnerability is presented as individual, subjective, and mutable. It is also not portrayed as a constant. Vulnerability in these categories varies over time and within social arrangements. Ten Have labels these as “contingent” categories of vulnerability.
The first contingent category is vulnerability as arising from experience — the experience of living or being in the world. Who is vulnerable is determined by such things as age, social position, resources, and health. In the next category, vulnerability can arise from our “relatedness.” We experience the world in social and natural environments and are inevitably affected by the actions and reactions of others – we are vulnerable to them.
The next contingent category is vulnerability as dependency, which can be seen as an extension of relatedness, but is also a potentially highly stigmatized form of vulnerability. Dependency can indicate a developmental lack of capacity to act independently, illustrated by the dependency of infants and children, for example. We are sympathetic and responsive to this type of dependency. However, dependency may be the product of bad choices and condemned as indicating a fundamental flaw in an individual. Many people make that judgement when it comes to addiction or poverty.
The final category of contingent vulnerability is an existential one: vulnerability as being held hostage to the other. Ten Have refers to this vulnerability as the inescapable ethical obligation that follows our recognition of the vulnerable other. In the face of the other, we are compelled to see our own vulnerability.
Unfortunately, these multiple categories do not clarify very much and, in fact, only further confuse. They bring about unavoidable comparisons among differentiated groups, which can only further impede understanding vulnerability and its implications, as well as what that might mean for either bioethics or law.
Specifically, these differentiated categories collapse two distinct dimensions of vulnerability: its source and its social consequences. The fundamental source or cause of vulnerability is the body. We are embodied beings (each of ten Have’s categories recognizes this). This unifying reality should not be overlooked because we feel compelled to respond to the debilitating results of particular injustices or harms that have arisen from social arrangements underlying the contingent categories.
- Ontological Vulnerability
The universal experience of embodiment must be understood as distinct from the political, ethical, or moral implications of social arrangements. It is true that our embodiment necessitates that we will be embedded in social relationships and institutions throughout our lives. However, our individual positions within those relationships and institutions are the product of political, ethical, and moral choices made over time by society. These choices are reflected in the organization of society’s institutions and the rules or laws that govern institutional practices and individual activities. These prior institutional design choices may produce unjust results in some situations for some individuals. When this happens, the ethical imperative is for those who have the authority to adjust or transform social relationships or institutions to do so in a just manner.
The ontological body and its social experience require separate, but admittedly related inquiries. One inquiry is descriptive and empirical in nature (what is the body), the other structural and normative (what social arrangements does the body compel). Since the body prefigures the political and ethical, its realities must inform them.
- Embodied Vulnerability
Acknowledging the ontological body is fundamental to understanding vulnerability theory as a coherent ethical position built around a universal vulnerable human subject. At this point, some might object to the label universal. There are clearly differences among bodies, so doesn’t that also mean there must be differences in the nature and degree of vulnerability across individuals? Most probably the person objecting has in mind the types of differences that reflect the variations that occur in human bodies, differences in gender, race, ability, age, and so on. Vulnerability theory describes these differences as horizontal differences. They reflect a snap-shot view of society and the various bodies that exist within it.
Recognizing horizontal differences is important, particularly in addressing unwarranted discrimination associated with these bodily differences. Attention to horizontal differences guides development of the rules and laws designed to mediate the relationships among individuals. It also is essential in defining the relationship between individuals and those officials who govern them. In this regard, principles such as equality, liberty, autonomy, and independence have emerged and are considered paramount in eliminating, rectifying, or compensating harms and disparities resulting from exclusion, discrimination, and marginalization.
Vulnerability theory asks us to look beyond that form of horizontal difference (at least initially) and consider the implications of another form of difference. This type of difference is inherent within each and every body understood ontologically. It is a universal form of difference that is illuminated by taking a life-course perspective on difference in contrast to a snap shot. Every living human body inevitably changes over time. Some of those changes are developmental. Interestingly, developmental changes reveal one of the fallacies in the tendency to think of vulnerability in negative and comparative terms. The body is not only the site of decline. Intellectual, emotional, and physical capacity evolves and can increase and intensify over time, enabling an individual to engage in creative and constructive endeavors.
Of course there are negative developmental changes, physical and mental decline and ultimately death. But even these negative implications of our embodied vulnerability should be thought of as generative. That the body is finite, weak, and fragile necessitates social action and institutional building, which are innovative, creative, and beneficial activities. The important point made here is that changes are both negative and positive.
Significantly, positive changes can be encouraged, or negative changes deterred. Some specific changes may be predictable, such as those often associated with aging, while others unforeseen and not within our control, such as those arising from accident, injury, or as a result of environmental events. However, the unavoidable fact about the body is that profound changes are inescapable.
This inherent susceptibility to change is at the core of human existence and it is how vulnerability theory defines vulnerability. “Vulnerability is the unavoidable susceptibility to change, both positive and negative, in our physical and social wellbeing that we experience over the life course.” This definition encompasses, but is not confined to the possibility of harm or injury – to being wounded.
- Embedded Vulnerability
Of course, all of the facts about the body and change considered in the previous section are all perfectly obvious, particularly to health care professionals. Therefore, at this point a fair question to raise might be “why do you dwell on the body and change in this chapter?” The answer is that I do so because the social implications of our changing embodiment are largely not reflected in the laws, norms, values, and aspirations we have established within society and its institutions.
The ontological body is often ignored in discussing social and institutional arrangements and this is true in both legal and ethical discussions. The realities of the body are supplanted by abstract principles such as equality and autonomy. The ontological body would bring the discussion back to dependency, which was listed as one of ten Have’s contingent categories. But dependency in vulnerability theory is not contingent. Nor is it merely a variation of vulnerability. Dependency is the unavoidable consequence or ultimate implication of embodied vulnerability. The fundamental reality is that our bodies render us inescapably dependent on social relationships and institutions throughout our lives. These social arrangements must provide the resources, such as education, health, wealth, and so on that cumulatively give us resilience. Resilience here is defined as the ability to adapt, adjust, survive, even thrive, in our vulnerability and the various resources we acquire are indispensable in those processes.
Dependency is not a harm or injury, nor is it deviant or exceptional. Like vulnerability, dependency is inherent in the human condition. However, it is important to distinguish between dependency and vulnerability. They are different in important ways, which underscores why it is important not to confuse the body (embodiment) with the social or institutional (embeddedness).
Vulnerability is universal and constant, located in the body and its susceptibility to change. Dependency arises from the necessity of social arrangements to the ontological body. While constant, dependency can change over time in both degree and form. Our embodiment means that at times we are dependent on care from others. This is most evident in infancy, where the family is the social institution primarily responsibility for that care. Significantly, the family is not the only institution involved in caring for the infant. The healthcare system, along with the social welfare system (including insurance) must also provide the resources essential to care.
Later in life when our need for care arises because we are injured, ill or disabled, these institutions typically become more prominent than the family. In that way we can see that dependency on care varies over the life course, as do the specific institutional arrangements for care. Therefore, dependency should be understood as both universal (experienced by everyone) and episodic, alterable, and individual (contextual).
The symbiotic relationship between the ontological body and social institutions presents significant challenges for law, politics, and ethics. For one thing, when we begin with the ontological and dependent physical body, the dilemma of structural or institutional inequality is revealed. At this point in the discussion we leave behind the universality of vulnerability and consider the particularity of dependencies:
When you look at the family as a social institution, it is apparent that the relationships within the institution are often of necessity unequal. Parent and child should not be considered equals. They have different, even if complementary needs and responsibilities. The same inequality of need and responsibility is also found in situations of institutional caregiving. Healthcare providers and their patients are not in an equal position, nor do they possess equivalent resources. These relationships of appropriate and unavoidable inequality present a major challenge for those structuring, regulating, or monitoring those relationships, whether they be lawyers or bioethicists.
Have we structured these relationships of inevitable inequality between individuals so that they operate justly and fairly? In asking this question, I shift the focus from the characteristics of the individuals, to the characteristics of institutions and institutional design. The task is to critically assess the functioning, effectiveness, and success of institutional arrangements already in existence – the family and the healthcare system – and to imagine how they might be made better.
This focus should bring to the fore the responsibilities of those who are in the more advantaged or powerful positions within social relationships and institutions. The fundamental question would be “How do we define the distinctive responsibilities of those who shape and control the rules and practices governing relationships of inevitable, even necessary and desirable inequality?” What rules, values and norms should govern the expectations, behavior, and practices inherent in the relationships of dependency that arise from our ontological vulnerability?
This question presents a difficult and largely unaddressed challenge for law, which tends to revolve around principles such as equality and individual liberty. Law creates rights for a legal subject perceived to be autonomous and independent, laws in which dependency and relationships of inevitable inequality typically are ignored or denied. When law focuses on specific instances of discrimination, it often ignores the institutional character of inequity by defining harm too narrowly.
Importantly, in ignoring the obviously dependent, law also ignores the needs of those individuals who superficially appear autonomous and independent. To explain how this happens, let us return to dependency on care, but this time focusing on the position of the caretaker. This focus reveals a second, distinct, but related form of dependency, which is social in form, but derived from the demands of the ontological body.
A “derivative” dependency arises when one occupies the social role of caretaker for others. Caretakers or, more accurately, those who undertake caretaking responsibilities, are structurally dependent on resources, accommodation, and support in order to successfully accomplish that care. These resources can come from within the institutions of the family, for example, in the form of a spouse’s paycheck or a grandmother’s provision of childcare. Resources must also be available and accessible in the larger community, however. Family and medical leave policies in the workplace or governmental nutrition and public health programs can provide essential assistance to the caretaker. Significantly, derivative dependency is not confined to the family. Healthcare professionals rely on institutional support and structures, as well as governmental and philanthropic funding for their research.
Derivative dependency describes the necessary interconnectedness of the institutions in complex modern societies. No social institution stands alone. The family coexists with and must reflect and adapt to institutional arrangements in the workplace and the welfare and regulatory state, among other societal systems. The healthcare system relies on other institutions for funding and must reflect and adapt to the organization of the educational and professional associations, finance systems and regulatory agencies in which it operates.
Furthermore, the caretaker’s reliance on a web of social arrangements and institutions is not exceptional, but exemplary. To fulfill the expectations of the social roles we occupy across the life course, from student to employer or employee to parent, to pensioner, we are dependent on a multiplicity of social institutions and relationships throughout the life course. The particular institutions may shift or wax and wane, but the dependency on the collective society they compose is constant, even for those of us who are not currently caretakers or in need of care.
- Creating Responsive Systems
The question raised in a vulnerability analysis is: “If our bodily needs and the messy dependency they carry with them cannot be ignored in life, how can it be absent from our theories about society and its organization and operation?” Across disciplines, including law, political theory, philosophy, economics, and ethics, human beings are consistently presented as ideally autonomous, independent, rational, fully-functioning adult beings. The abstracted autonomous subject is taken out of social relationships; removed from the structures in which we actually experience vulnerability and upon which we depend for the resources to ameliorate it. Dependency in adulthood is typically read as a “failure” of independence and the solution devised by law and policy makers is one that will either bolster and increase an individual’s autonomy, or grudgingly provide some meager, stigmatized support.
The primacy of this autonomous and independent subject is what is challenged by beginning with the ontological body and understanding the implications of vulnerability and dependency. Also called into question are the practical devices and rules we have developed with this impoverished and inaccurate subject in mind. Terms such as consent and legal constructs, such as contract, are woefully inadequate tools with which to address the inescapable and lifelong dependency that our vulnerability produces. We need new rules and structures that are responsive to the realities of vulnerability and dependency.
Vulnerability theory is meeting that challenge in rethinking the legal implications of social arrangements of inherent inequality such as the relationship of parent and child, employer and employee, or shareholder and consumer. The laws that currently structure these relationships are based on the needs and desires of a mythical autonomous and independent legal subject. We must replace the liberal subject with the vulnerable legal subject and reimagine what that would mean for contract, family, employment, criminal, and corporate law, among others.
This rethinking also has implications for the profession of law and definitions of professional responsibility and legal ethics. The professional relationship between lawyer (or judge and legislature) and client (or litigant and citizen) is inherently unequal. There is not only an inequality of expertise, but also an inequality when it comes to access to institutions and to power. The legal profession should have corresponding responsibilities to individuals using the legal system. The profession must also, recognize that as a social institution, it has distinct responsibilities to collective society, which may be in tension with the interests of individual clients. Law and bioethics are allied in addressing some persistent questions of justice, responsibility, and care. Sometimes the professional responses even overlap. Both professions also celebrate many of the same values and objectives. Significantly, vulnerability theory is equally challenging to both as they are now constituted.
The lawyer must leave it to the bioethicist to explore the specifics of how to reshape the relationship between researcher and research subject or healthcare provider and patient. However, in order to justly identify and address ethical problems arising within social relationships and structures, it is essential for the bioethicist to be fully aware that ontological vulnerability prefigures the ethical. This means bioethical principles, practices, and priorities also must be built around the vulnerable, not the mythical autonomous and independent human subject.
 The article that launched the Vulnerability and the Human Condition Initiative at Emory University was Fineman, Martha Albertson, “The Vulnerable Subject, Anchoring Equality in the Human Condition,” 20 Yale Journal of Law and Feminism 1 (2008).
 See Fineman, Martha Albertson, ‘ “Elderly” As Vulnerable: Rethinking the Nature of Individual and Societal Responsibility’, The Elder Law Journal, Volume 20 (1), 2012
 Office of the Sec’y, Nat’l Comm’n for the Protection of Human Subjects of Biomedical & Behavioral Research, The Belmont Report (April 18, 1979). That same year, Principles of Biomedical Ethics, by philosophers Tom L. Beauchamp & James F. Childress was published by Oxford Press.
 The Belmont Report at 3.
 Council for International Organizations of Medical Sciences (CIOMS), International Ethical Guidelines for Biomedical Research Involving Human Subjects, (CIOMS, 2002), 41.
 UNESCO, Universal Declaration on Bioethics and Human Right, Article 8.
 Henk ten Have, Vulnerability: Challenging Bioethics, Routledge 2016.
 Ibid. See pages 67-68 and 79 for general criticisms of vulnerability.
 Ibid at 97-98.
 Ibid at 98-99.
 Ibid at 99-100.
 Ibid at 100-101.
 Ibid at 101-103.
 Ibid at 103-105.
 The concept of unifying, universal bodily vulnerability is also discussed in the context of law and politics in Fineman, Martha Albertson, “Equality, Autonomy, and the Vulnerable Subject in Law and Politics,” in Fineman, Martha Albertson and Grear, Anna, Vulnerability: Reflections on a New Ethical Foundation for Law and Politic (Ashgate 2013).
 The arguments in the discussion of vulnerability theory in Section III of this chapter are distillations of arguments I have developed in a dozen articles written over the past decade. The first article is found in note 1, one of the most recent is in note 29. See also: Fineman, Martha Albertson “Injury in the Unresponsive State: Writing the Vulnerable Subject into Neo-Liberal Legal Culture,” in Injury and Injustice: The Cultural Politics of Harm and Redress, Cambridge University Press: A. Bloom, D. Engel, M. McCann eds. (2018) and “Vulnerability and Social Justice,”30 Valparaiso Law Review (forthcoming, 2019).
 See Fineman, Martha Albertson “The Vulnerable Subject: Anchoring Equality in the Human Condition,” 20 Yale Journal of Law & Feminism 1 (2008).
 For a discussion on how vulnerability theory is helpful in moving beyond limited social categories like gender, see Dinner, Deborah, “Vulnerability as a Category of Historical Analysis: Initial Thoughts in Tribute to Martha Albertson Fineman,” 67 Emory L.J., 1149 (2018)
 See note 8 supra.
 See note 2 supra.
 That inescapable physical change and the inevitable inequalities in society call for a responsive, just state to promote resilience for all. See Fineman, Martha Albertson, ‘Vulnerability and Inevitable Inequality’ (December 13, 2017). Oslo Law Review, Vol. 4, pp133-149
 Vulnerability theory grew out of my earlier work on dependency, inevitable inequality and social interdependence. See Fineman, Martha Albertson, ‘The Autonomy Myth: A Theory of Dependency’, The New Press, NY, 2004
 For a discussion on marriage and family being institutions created to mitigate vulnerability, see Marvel, Stu, ‘The Evolution of Plural Parentage: Applying Vulnerability Theory to Polygamy and Same-Sex Marriage’, 64 Emory L.J. 2047 (2015).
 See note 19 supra.
 The concept of the responsive state was first developed in: “The Vulnerable Subject and the Responsive State,” 60 Emory Law Journal – (Symposium Issue on “The New New Deal” — 2011).
Fineman, Martha. (2019). Vulnerability in Law and Bioethics. Journal of Health Care for the Poor and Underserved. 30. 52-61. 10.1353/hpu.2019.0115.