Vulnerability in Healthcare and Research involving Children
- Vulnerability in Healthcare and Research involving Children
Vulnerability is a fundamental area of interest and debate in bioethics, and where children and young persons are concerned, it is typically invoked as justification for specific measures of protection. There is a degree of consensus that vulnerability is a complex that encapsulates overlapping moral interests and concerns arising from our needs as human beings, commonly manifested in different types and levels of dependencies. Not surprisingly, several taxonomies of vulnerability have been proposed. For instance, the taxonomy of Mackenzie, Rogers and Dodds comprises three different sources (which are inherent, situational and pathogenic) and two different states of vulnerability (these being dispositional and occurrent).1 A commonality that this taxonomy shares with other taxonomies is the acknowledgement that vulnerability is intrinsic to being human, which is broadly referred to as inherent or ontological vulnerability. There is also a general commonality of goal in enabling the identification of specific (and especially extraordinary) forms of vulnerability that necessitate overt interventions in mitigating potentially greater harms. Clearly, children and young persons have greater inherent vulnerability owing to their physical and cognitive limitations, as well as their proportionately lower capacity of meeting particular needs. [End Page 115]
There is less agreement over the gravity of situational and pathological sources of vulnerability, and the responses that should follow, particularly in the identification and attribution of ethical responsibilities. Situational vulnerability may be confounded by the fact that the most ethically pertinent context is not always readily identifiable, and it could be rendered more complicated by pathogenic vulnerabilities that arise from institutional or system-level deficiencies. For instance, the outbreak of a previously unknown epidemic in an area ravaged by war and natural disaster gives rise to both situational and pathogenic vulnerabilities. Yet the concept of vulnerability continues to find relevance and persuasion in ethical deliberation and action, such as in deciding whether and how healthcare and research interventions should follow for populations in the affected areas, and who should have what responsibilities, as well as the ethical principles that should apply.
The contributions in this issue focus on furthering the analysis of vulnerability in certain healthcare and research interventions involving children and young persons (or persons who are regarded as legal minors in their domestic legal systems). At least five overlapping themes may be surmised from the various submissions in understanding the construct and implications of vulnerability: (1) the especial relevance of harm from an increased likelihood of moral interests being compromised or violated; (2) concerns with consent; (3) promoting agency and capacity development as a response to vulnerability; (4) evaluating risks and benefits in research; and (5) post-research assessment. The contributing authors in turn elaborate on each of these themes.
Situationally Conditioned Moral Interests and Harms
Focusing on the greater inherent vulnerability in children and young persons per se is wrongheaded when deciding on whether they should participate in clinical trials. The rationale for this is clearly set out in Katharine Wright’s ‘Perspectives’ paper in this issue, concerning the recently published report of the Nuffield Council on Bioethics: Children and Clinical Research.2 As she explains, the source of vulnerability arises in the context or situation in which children may be placed, rather than in the inherent nature of childhood, or in innate aspects of research with children. Classifying a group as vulnerable, rather than a situation as creating vulnerability, acts simply to disguise the possibility of amelioration, and tells us nothing about the actual vulnerability of any particular member of that group, or of the particular way in which they may (or may not) happen to be vulnerable. [End Page 116]
Broadening the argument to health policy, Samia Hurst’s article presents a diagnostic approach to protecting the vulnerable, where vulnerability is to be understood as an increased risk of incurring a wrong in specific cases. As a starting point, general vulnerability that is common to all and rooted in our common biology should be distinguished from special vulnerability that underpins requirements for additional protection. This special vulnerability is defined as an increased probability of being wronged, or having one’s morally protected interests unjustly compromised...
