Ethics of Health Research in Communities: Perspectives From the Southwestern United States

Given the current increase in overall interest and funding for research engaging communities - including the current CTSA funding - this is a very timely article to increase researcher awareness of the ethics of engaging communities. It offers findings to support previous authors, quoted in the article, who have argued for expansion of the Belmont Report to respect the needs of communities in addition to the protection of individuals.

This article is one of the first to document the views of community members. The results highlight the Hispanic/Latino and Native American community members concerns and negative experiences resulting from both internal and external stigmatization. Harms resulting from published research results included increased insurance rates, negative labeling, stigmatization of community without recourse, and lack of benefits to community. Based on similar experiences Indigenous communities in Canada[1] and other countries have developed codes of research ethics requiring researchers to undertake research in partnerships with communities and emphasize need for community benefits including community capacity building. These ethical codes are very relevant for other community settings.

Thus engaging communities require researchers to reframe their research as research ‘with’ and not ‘in’, ‘on’ or ‘about’ communities. Those engaging with communities can apply principles of participatory research, that calls for partnerships between researchers and those affected by the issue being researched. A core value is that all partners participate in all phases of the research process, including interpretation and dissemination of results, and using the results to benefit the communities[2]. Goals include respecting needs of communities, increasing research relevance and avoiding the previous harms outlined in the article.

1. Canadian Institutes for Health Research. CIHR Guidelines for Research Involving Aboriginal People 2007 www.cihr-irsc.gc.ca/e/29134.html.
2. Cargo M, Mercer SL. The Value and Challenges of Participatory Research: Strengthening Its Practice. Annual Review of Public Health, 2008;29(1):325-350.

Competing interests:   None declared