Communicating with communities about emergency research

Abstract

The challenge of effectively communicating with communities about research is particularly salient for investigators who are conducting emergency research with an exception from informed consent. The authors discuss the ethical basis for the community consultation requirement and describe the nature and extent of the consultative process required to achieve these ethical purposes. The findings of the consensus conference are summarized as follows. 1) The requirements for community consultation and public disclosure for exception from informed consent studies serve important ethical purposes and should be retained. 2) Community consultation allows investigators and institutional review boards to obtain input from the community regarding planned research. The process serves to facilitate understanding, promote trust, ensure justice, and protect research participants. 3) Community consultation is a process that requires active participation by community members; however, it does not require their approval, consent, or consensus. The practical challenges involved in conducting meaningful community consultation are also discussed: defining the community and its appropriate representatives, methods to actively engage the community, the lack of uniformity among institutional review boards in required community consultation activities, and the lack of measures to evaluate the adequacy and appropriateness of community consultation. The recommendations of the consensus conference regarding future research about community consultation are summarized. Priorities include identifying best practices; defining effectiveness and developing measures to evaluate community consultation; evaluating alternative models and potential infrastructures to facilitate, conduct, and/or oversee effective community consultation processes; and developing educational modules for community members to empower their active participation in discussions about emergency research in their communities.