Researcher Trustworthiness in Community-Academic Research Partnerships: Implications for Genomic Research

Abstract

For many communities, health research exists on a backdrop of distrust of research institutions. Decades of harmful experiences across many types of health research have contributed, including studies of genetics, infectious diseases, therapeutic drug trials, social-behavioral phenomena, and environmental exposures, such as unconsented exposure to radiation in Alaska Native communities. In addition to historical harms, ongoing policies and norms signal disrespect and untrustworthiness to communities that might otherwise be interested in research. Distrust born out of this harm has led to a lack of participation in health research, which threatens to deny these communities potential benefits from large public research investments, and to increase existing disparities in health and health care. However, research is often recognized as potentially beneficial to communities, and many communities would like to participate on their own terms. Novel approaches to research with communities have developed in recent decades, founded on the idea that the affected or studied community should be an equal partner in the research. Community-academic partnerships taking approaches such as community-based participatory research (CBPR), have become increasingly prevalent, and funding for large clinical research programs, such as the Patient-Centered Outcomes Research Institute (PCORI) have stipulated that grantees have community co-investigators in their studies. Throughout the community-academic research partnership literature, building trust is seen as essential to meeting partnership goals, and to upholding CBPR principles. Given the checkered institutional history, academic researchers hold a responsibility to cultivate their own trustworthiness with regard to communities, in order to build trust and start to overcome these barriers. Few partnerships have described how they have built or evaluated trust and even fewer have described researcher trustworthiness in their partnerships. I employed a mixed-methods approach to address three key aims: 1a) To characterize trustworthiness within community-academic research partnerships, and b) to identify institutional barriers to trustworthiness encountered by such partnerships, and approaches taken to overcome those barriers; 2) To develop a measure of researcher trustworthiness in community-academic research partnerships; and 3) To identify opportunities to cultivate trustworthiness within a case of genetic research, APOL1 testing for End-Stage Renal Disease risk in African American communities.