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

Area of Science:

• Public Health
• Research Ethics
• Community-Based Participatory Research

Background:

• Institutional Review Boards (IRBs) primarily protect individual participants.
• IRBs do not routinely assess community consent, risks, or benefits.
• Community groups are developing their own ethics review processes for research conducted within their communities.

Purpose of the Study:

• To identify and describe community-led ethics review processes.
• To strengthen the ethical review of community-engaged research.
• To understand how communities engage in research oversight.

Main Methods:

• An online survey was conducted in 2008.
• Targeted US-based community groups and community-institutional partnerships involved in human-participants research.
• 109 respondents with established ethics review processes were identified.

Main Results:

• Community ethics review processes operate through partnerships, community organizations, health centers, and tribal groups.
• Processes aim to ensure community engagement, benefit, and protection from harm.
• Key benefits include community voice in study selection, relevance, feasibility, and capacity building.
• Challenges include the time and resources required to support these processes.

Conclusions:

• Community-based ethics review processes address community-level ethical considerations.
• These community-level issues are often overlooked by institution-based IRBs.
• Community engagement in research ethics review is crucial for equitable research practices.