Responsibilities to plan for ancillary care pose ethical challenges for nutrition research in the community setting

Abstract

Investigators who conduct nutrition research in the community setting, particularly among underserved populations, face the ethical question of whether and how to respond to participants' unmet health needs. The research ethics literature conceptualizes this question as one of ancillary care (AC): what is the nature and extent of researchers' ethical responsibilities, if any, to provide or facilitate health care that research participants need but that is not necessary to ensure the safety or scientific validity of the research? In this paper, we highlight 3 ethical challenges involved in the planning of AC responses for nutrition research conducted in the community setting: influence of provision of AC on primary study outcomes as an issue of trial design; whether to extend the provision of AC beyond research participants to nonparticipants with the same health needs; and how best to train field workers who may be the most likely members of the study team to encounter the health needs anticipated among participants. Although the global ethical discussion of AC is gaining in depth, breadth, and practical influence, it remains relatively uninformed by perspectives specific to nutrition research. Our objective is to encourage nutrition researchers to engage proactively in the emerging ethical discussion of AC, so that their relevant experiences and concerns can be taken into account in the eventual formation of ethical guidelines and policies.