How Can the Ethics of CHI Research Help Advance Research Ethics?

Abstract In this chapter, the author considers the broader implications of this analysis of the ethics of controlled human infection (CHI) research for the rest of human subjects research. As CHI research raises a set of issues that are complex and sometimes unresolved in research ethics, examining CHI research can spur progress in these important areas. This matters because the research ethics literature has yet to resolve questions such as how to judge the social value of research, the upper limit of risk in research, and whether self-experimentation is ethically acceptable. This chapter reveals several lessons, including that social value judgments should be done by bodies other than Institutional Review Boards (IRBs) to take a bigger picture view of how a given study fits into a body of research; having more rigorous review by others can then allow IRBs to relax their analysis of social value and focus on other aspects of the research. Additionally, self-experimentation can raise important ethical concerns that may be difficult for oversight bodies to address without lapsing into unjustified paternalism. Perhaps the most important lesson is that there is a need to elevate the act of participating in research. Research participants typically receive public attention only when they have been harmed or exploited in research. The discussion of CHI research and the prominence of the advocacy organization 1DaySooner during the COVID-19 pandemic presents an opportunity to decrease the stigma associated with research participation and promote greater societal respect for the critical contributions research participants make to scientific advances.