PredictER Blog and the PredictER program have an ongoing interest in encouraging community engagement in genetic and predictive health research. Patrick Barrett introduced this mission in the previous PredictER Blog post (November 19, 2007.) For those with an interest in reading the latest research on this topic, here are brief summaries of three recent papers:
Grand challenges in global health: community engagement in research in developing countries ...
Tindana PO, Sing JA, and et al. provide a short review of community engagement (CE) concepts for research in developing countries and discuss two models in Africa. Although the authors note that community engagement goals "have become prominent in research policy", they point to divergent definitions of CE and the need for evaluation. They caution that "there is a growing recognition that communities, not just individuals, can suffer harm from participation in research. For example, with out adequate protections, population genetics research runs the risk of stigmatizing or discriminating against recognizable communities ....". The authors plan to document CE in developing countries and to develop preliminary guidelines to facilitate CE in research.
Community engagement in epidemiological research ...
Sapienza JN, Corbie-Smith G, Keim S, and Fleishcman AR outline the CE practices and plan of The National Children's Study (NCS). In introducing the project, they note that CE "can be quite complex, even within a single site due to the difficulty researchers have in defining communities". In addition to the difficulty of defining "community" they add that "finding key community leaders that will best represent [the] multitude of community views and perspectives" can be a challenge.
An examination of community members', researchers' and health professionals' perceptions of barriers to minority participation in medical research ...
Robinson JM and Trochim WMK, in a "concept mapping" study of perceived barriers to minority participation in research, demonstrate that the research system (in addition to the often discussed lack of trust in researchers) contributes to lower participation rates. The authors also discuss the discrepancy between how health professionals and community members define these barriers. They conclude with three recommendations for improved minority participation rates in health research: (1) improve relationships between the medical research community and the communities they serve; (2) increase the levels and improve the nature of community involvement in the research process; and (3) efforts must be multi-dimensional, addressing both community interrelations and research process issues.
Robinson JM and Trochim WMK. An examination of community members', researchers' and health professionals' perceptions of barriers to minority participation in medical research: an application of concept mapping. Ethnicity and Health 2007; 12(5):521-39.
DOI: 10.1080/13557850701616987 PredictER CiteULike [abstract]
Sapienza JN, Corbie-Smith G, Keim S, and Fleishcman AR. Community engagement in epidemiological research. Ambul Pediatr 2007; 7(3): 247-52.
PubMed ID: 17512886 PredictER CiteULike [abstract]
Tindana PO, Singh JA, Tracy CS, Upshur RE, Daar AS, Singer PA, Frohlich J , Lavery JV. Grand challenges in global health: community engagement in research in developing countries. PLoS Med. 2007 Sep 11;4(9):e273
PubMed ID: 1785017 PredictER CiteULike [abstract]