Expressions of (Mis)trust: How trust is expressed for public health programs among African American, Hispanic/Latino, and Arab American Communities in Michigan.
Saturday, September 21, 2024
11:30 AM – 12:30 PM CT
Location: Regency Ballroom B (First Floor)
Abstract: Trust is often invoked as a cornerstone of public health, research, and healthcare. Informed consent is one process by which trustworthiness is demonstrated, if not ensured. In particular, establishing trust is essential when enrolling historically marginalized participants in studies that utilize biological samples and data. In this study, we examine narratives of trust and mistrust in the context of informed consent for the Michigan BioTrust for Health, a research Biobank coupled with the state’s newborn screening program. We conducted five focus group sessions with Arab American, African American, and Hispanic/Latino populations in Michigan. These sessions are part of a broader implementation research study aimed at evaluating an electronic informed consent intervention approach for the Michigan BioTrust program in hospitals serving diverse patients. We identified competency, “greater good,” integrity, mistrust, and personal/prior experience as the most salient axes for trust. Participants expressed mistrust based on both individual and community-level experiences. For example, the erosion of community trust in systems due to historical instances of biospecimen and data usage without explicit consent mirrored individual concerns about privacy and confidentiality in relation to the BioTrust for Health program, resulting in mistrust. We consider the implications of these findings to understand how trust can be built and maintained in public health programs and research. Additionally, we will discuss how researchers can better integrate community voices throughout the research process and become more trustworthy. By focusing on underrepresented populations, we can inform the development of more inclusive and culturally sensitive approaches to biospecimen research.
Learning Objectives:
After participating in this conference, attendees should be able to:
At the end of this session, attendees will be able to understand cultural nuances and identify key system trust indicators, focusing on underrepresented populations.
At the end of this session, attendees will be able to apply the understanding of how trust is expressed towards public health programs and research among underrepresented populations.
Gloria Carmona Clavijo, MPH – Senior Research Specialist, Learning Health Sciences, University of Michigan; Jodyn Platt, MPH, PhD – Associate Professor of Learning Health Sciences, Learning Health Sciences, University of Michigan; Reema Hamasha, MS – Research Area Specialist, Learning Health Sciences, University of Michigan; Roselle Ponsaran – Assistant Research Director, Bioethics, Case Western Reserve University; Aaron Goldenberg, MPH, PhD – Professor and Vice Chair, Bioethics, Case Western Reserve University; Erin Johnson, PhD – Research Assistant Professor, Obstetrics and Gynecology, University of Utah; Erin Rothwell, PhD – Professor of Obstetrics & Gynecology, Obstetrics and Gynecology, University of Utah