Utilizing Community-Based Participatory Action Research Approaches to Inform Equitable OCD Genetics Research in Diverse Populations

Baylor College Of Medicine, Houston TX

Investigators

Linked publications & trials

Abstract

Project Abstract The wide ethnoracial disparity in genetic studies for OCD impedes understanding of genetic risk factors, leading to downstream disparities in the application of genetic findings (e.g., polygenetic risk scores). The lack of representation in OCD genetics research naturally begets questions as to why this knowledge gap exists. For individuals from minoritized populations, concerns such as medical racism, acculturation barriers, mistrust of health systems, and mental health stigma are well-studied and commonly discussed contributing factors of biomedical research disparities in the United States. However, acknowledging these factors alone has not demonstrated success in addressing these disparities. More probable causes include culturally-deficient recruitment strategies and limited interface with community stakeholders to develop research approaches that reflect the needs of the population under study. For example, the occurrence of cross-cultural differences in OCD symptom presentation may impede individuals from believing that they are even eligible to participate in OCD genetics research.4 This suggests that the population is not hard to reach, but hardly reached. Moreover, limited attention is often devoted to developing coalitions with minoritized communities to better understand how to best engage participants in OCD genetics research, rather than simply attempt to recruit them. Investigative frameworks such as Community-Based Participatory Action Research (C-BPAR) are helpful approaches to draw from to best involve stakeholders in developing recruitment strategies with cultural humility. Therefore, the proposed diversity training supplement in support of a promising current postdoctoral fellow not currently engaged in the LATINO study (Ogechi Chidima Onyeka, Ph.D.) aims to advance the parent grant by utilizing C-BPAR to develop community-informed recommendations on culturally-relevant best practices for recruiting individuals of Latin American descent for OCD genetics research. The proposal also aims to expand the study population to include identifying recruitment strategies for individuals of African descent as they are (1) also underrepresented in OCD genetics research, and (2) ensure that African-descended people of Latine/x and/or Hispanic heritage are also adequately represented in this field of study. Lastly, data obtained will also inform the development of a pilot quantitative survey to better understand stakeholders' views on OCD genetics research based on community-informed concerns.