'Vulnerability in Law and Bioethics' by Martha Albertson Fineman in (2020) 30 Journal of Health Care for the Poor and Underserved 52 comments
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.
Fineman states
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 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.
