Understanding community-based processes for research ethics review: a national study.

Abstract

Institutional review boards (IRBs), designed to protect individual study participants, do not routinely assess community consent, risks, and benefits. Community groups are establishing ethics review processes to determine whether and how research is conducted in their communities. To strengthen the ethics review of community-engaged research, we sought to identify and describe these processes. In 2008 we conducted an online survey of US-based community groups and community-institutional partnerships involved in human-participants research. We identified 109 respondents who met participation criteria and had ethics review processes in place. The respondents' processes mainly functioned through community-institutional partnerships, community-based organizations, community health centers, and tribal organizations. These processes had been created primarily to ensure that the involved communities were engaged in and directly benefited from research and were protected from research harms. The primary process benefits included giving communities a voice in determining which studies were conducted and ensuring that studies were relevant and feasible, and that they built community capacity. The primary process challenges were the time and resources needed to support the process. Community-based processes for ethics review consider community-level ethical issues that institution-based IRBs often do not.