- Vulnerability and Incarceration: Evaluating Protections for Prisoners in Research by Elizabeth Victor
by Elizabeth Victor.
Lanham, MD: Lexington Books, 2019
Should incarcerated persons be able to participate in medical research? While this is a much-debated question, Elizabeth Victor offers a fresh perspective on [End Page 164] current regulatory approaches to research with prisoners. She delivers exactly what her book title promises: a reevaluation of protective frameworks based on her adaptation of the concept of vulnerability.
Victor employs a definition of vulnerability that is “dynamic, capturing the particularities of an individual’s situation within a community of practices, norms, and a specific history” (11). However, she also emphasizes that “by reinforcing vulnerability in populations, these practices create, sustain, or reinforce asymmetric power relations” (10), which shows how the concept can be applied to the individual and collective. As a consequence, “whether someone is vulnerable depends on the physical health, social, political, and economic circumstances of that individual” (12), and she further explains how the particular contexts of incarcerated individuals shape their experience and their particular vulnerability. This is a response to the common classification of prisoners as vulnerable populations in bioethics, which gives rise to the extensive attempts at protecting them from exploitation because “prisoners face restrictions on liberty and autonomy, limited privacy, and often inadequate healthcare” (17). Victor uses vulnerability as a contextual concept, which depends on situational factors, in order to propose more nuanced evaluations of which individuals may be allowed to participate in research while incarcerated. By reframing vulnerability such, she introduces a question that is often overlooked in discussions that focus on the protection of vulnerable populations: What about their right to participate in research? Prisoners, in particular, may be a controversial group to some when discussing rights, but Victor makes a strong argument for why we should reconsider their vulnerability and their participation in research.
In chapter two, Victor gives a historical overview of research regulations and their definitions of vulnerability. She outlines medical exploitation and describes ethical frameworks from the Nuremberg Code, the Declaration of Helsinki, and the Belmont Report to the subject of her main criticism in this book: the Institute of Medicine (IOM) Committee on Ethical Considerations for Revisions to the Department of Health and Human Services (DHHS) Regulations for Protection of Prisoners Involved in Research and its regulatory recommendations (25). Victor rightly notes how problematic current regulations are, calling them a “patchwork of guidelines and rules” (33) and clearly points out how inconsistently they are applied. Victor emphasizes the importance of personal, lived experiences of prisoners to improve the system and close gaps in regulations, which I think is an important but often overlooked aspect in any discussion of prisoners’ lives. She outlines the IOM Committee’s recommendations that address the “variability in oversight, transparency, and regulations between states and based on the funding sources of research” to “ensure consistent, universal protection” (37) and “allow individual risk-benefit assessments to determine how the risks and benefits associated with a research study would affect the individual” (38). Furthermore, the recommendations suggest “the use of collaborative research approaches” (38) and encourage “systematic oversight” (39) of research. [End Page 165]
In chapter three, Victor examines the IOM Committee recommendation to use a risk-benefit approach instead of category-based assessment to evaluate whether prisoners can participate in medical research. This “risk-benefit analysis allows prisoners to be treated as individuals, instead of focusing on prisoners as a class” (42), which connects to Victor’s idea of vulnerability as contextual and dynamic. Research frameworks aim at protecting subjects from coercion and exploitation and at promoting the individual’s autonomy and ability to give informed and meaningful consent. Victor’s argument about vulnerability and well-being now expands to include “a substantive relational account of autonomy” that “allows researchers to identify what areas of well-being may be threatened within specific prisons” (50). Given the dramatic discrepancies in living conditions and treatment in different prisons, individual analysis of each prisoner and their suitability is the ethically sound approach, which follows similar arguments justifying why case-based approaches to ethics are fairer and...