The Exclusion of Vulnerable Populations from Research

Abstract

AbstractWhat do ethics codes and guidelines tell us about who is vulnerable in research? To what are they vulnerable? And how might this vulnerability be addressed? These questions guided our analysis of 57 research ethics codes and guidelines that mention the involvement of vulnerable persons in research. The chapter draws upon the findings from this analysis to help explain how and why some people might be excluded from research unnecessarily. The investigation is also informed by the findings from an empirical study into the perspectives of 22 researchers who have extensive experience of undertaking research with vulnerable individuals. Their encounters with research governance measures, including research ethics approval and research ethics codes, expose challenges that can exacerbate unnecessary exclusion from research. We learn from the researchers and the research ethics codes that governance measures intended to protect the vulnerable from exploitation in research can lead to unfair exclusion when applied in a blanket fashion. Research governance guidelines and processes must encourage a more nuanced understanding of what it means to be vulnerable in research to ensure that people are not left behind unnecessarily.