Community confidentiality, consent, and the individual research process: Implications for demographic research

Abstract

Institutional review boards are increasingly meticulous about informed consent and risks and benefits to study participants. Concurrently, heated debate in a number of fields has advanced the notion of community risk and benefit. When research is conducted in communities, and the results may “do harm to” communities socially, economically, or medically, should informed and voluntary consent be obtained from communities as well? We argue that for demographers – by definition interested at the phenomena at the population level – concern for individuals as a part of communities is critical to the research process. Questions of community consent, confidentiality, and participation will be pushed to the fore as demography delves into new areas and methods of investigation. This paper provides a brief overview of the historical development of ethics in human subjects research and the subsequent ties to community-level concerns. Drawing on current examples from a variety of settings, we explore definitions of community, the scope and viability of community participation in research, and the implications of these for demographic enquiry. We find that in contrast to substantive debates, little attention has been given to ethical issues in the demographic research process. Research accountability to communities, including the documentation of community risks and benefits, and community representation and consultation in the research process are recommended.