Objective monitoring of mosquito bednet usage and the ethical challenge of privacy revelations about study bystanders: Ethical analysis.

Abstract

Clinical trials and public health surveillance of bednet use for malaria prevention involve the ongoing collection of sensitive data from private settings. This article discusses risks to bystanders, who have not consented to participating in surveillance or research, but whose behavior may nevertheless be recorded. In the case of clinical trials, community consultation and consent processes are one well-accepted way to address potential risk to bystanders. I argue that the intrusive monitoring required by some bednet trials may render this type of consent insufficient. In these cases, either bystanders should be enrolled as participants and give consent or less intrusive monitoring methods should be used. Validated monitoring methods should also have relevance for practice beyond use in a clinical trial. Considering the global impact of malaria, applying these methods to public health surveillance would be a practical use. Existing justifications for surveillance without consent, which sometimes result in coercive public health measures, could apply to the case of bednets. Particularly in cases where there is the potential for harm to others, individuals who were not the original subjects of disease reporting are often caught in the surveillance net. Although an argument can be made that malaria meets this bar, considerations of feasibility, sustainability, and trust make intrusive surveillance unsustainable in the case of a daily, lifelong behavior such as bednet use.