Vulnerability in Research and Health Care; Describing the Elephant in the Room?

Abstract

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.

Young carers: growing up with chronic illness in the family - a systematic review 2007-2017

“…The reasons are to be found in the methodical challenges, since due to the expected low prevalence a large sample is required in order to be able to identify the target group at all. It is also extremely difficult to gain access to the target group [5,23,27,35]. During the whole research period only one survey from Austria was identified [5], the results of which could be roughly compared with the previous parameters from Great Britain [4,36].…”

What Vulnerability? Whose Vulnerability? Conflict of Understandings in the Debate on Vulnerability

“…The comparative advantages of this definition are recognized in the focused attention on the characteristics of the environment rather than on the characteristics of the subjects; in broadening the scope of vulnerability as it remains open to the multiple nature of potential wrongs and sources of greater likelihood of suffering them; it conceptually dislocates the claim to special protection of the vulnerable outside of vulnerability itself to some other valid source; and practical usefulness in both research ethics and clinical ethics. As one of the limitations of the proposed definition, Hurst states that it excludes forms of vulnerability associated in general to being human, that is, the definition stays within the spectrum of special vulnerability (Hurst, 2008). The controversy concerning the two disparate views on the scope of vulnerability is addressed in a later article.…”

“…ATTEMPTS AT RESOLUTION Samia A. Hurst (2008) assumes that a definition of vulnerability should consist of a claim to special protection. A definition that includes humanity, such, for example, as the one provided in the Barcelona Declaration, is thus considered as too broad as it does not provide reasons for special protection.…”

“…This understanding of vulnerability is widely accepted in the field of medical ethics. Consequently, the field of medical ethics alone handles numerous applications of the descriptor ‗vulnerable' which has become ubiquitous to the point that its utility has been changed (Hurst, 2008;Levine et al, 2004;Luna, 2009;Macklin, 2003;Schroeder, Gefenas, 2009). Wrigley (2015) has listed some of the problems with these two understandings of vulnerability, as well as with attempts to construct some sort of overarching concept.…”

Clinical Research On Conditions Affecting Cognitive Capacity

“…One way to synthesize these different definitions, and to make headway towards defining what protections are needed, is to consider that vulnerability as a claim to special protection is any identifiably increased likelihood of being wronged (Hurst 2008).…”