It Takes a Village-Community Engagement Promotes Optimal Biobank Research

Developing successful biorepositories research that improves maternal and child health relies on trusted partnerships between engaged participants (the public) and investigators. Much can be learned from community based participatory research. Best practices for community engagement include 1) becoming knowledgeable about the community and its members to build relationships 2) communication during all phases of research that reflects respect (understanding goals of both investigators and participants, true informed consent, roles and responsibilities, returning results, reconsenting, planning implementation of discoveries into clinical practice), 3) wise yielding of control to the community and remaining flexible, and 4) capacity building that is rooted in the community's commitment, strengths, and values.

Applying these practices is also important for general populations, whose specimens have been and will be collected for repositories (newborn screening programs, residual tissues from biopsy, etc.). Members of the public enjoy the vital health benefits of biomedical research, but are generally unaware of the process that generates new treatments and cures, or the ethical standards that guide scientists. To ensure continued support for research it is necessary to promote understanding of emerging methods, like biorepositories, used in biomedical research and also to assure trusted practices are utilized.