Race for Cures: Rethinking the Racial Logics of ‘Trust’ in Biomedicine

Introduction

African-Americans have historically been subjected to experimental medical research while simultaneously denied access to various healthcare services. Since the enactment of legislation requiring that experimental medical research maintain a racially diverse population, researchers have found it difficult to meet those statutory requirements. Many researchers believe that the reluctance of African-Americans to enroll in experimental medical research is largely rooted in the perceived tendency of non-white people to distrust science and medicine. 

By attributing distrust in science as a broadly held belief in the African-American community, scholars have contributed to creating and reinforcing racial group boundaries. In doing so, researchers have largely ignored the institutional structures of inequality in biomedicine, differences within racial groups, and similarities across racial groups. Studying the context of stem cell research, Dr. Ruha Benjamin focuses on the ways in which discourse in biomedicine constructs racial group boundaries through diversity outreach, clinical gatekeeping, and charismatic collaborations. 

Dr. Benjamin is an Associate Professor in the Department of African American Studies at Princeton University. Much of her work specializes in the interdisciplinary study of science, medicine, and technology; race-ethnicity and gender; knowledge and power. 

Methods and Findings

Researchers’ attempts to create and maintain racially diverse populations in experimental treatments have contributed to the creation of a culturally framed binary: trust in experimental treatment is implicitly associated with whiteness and distrust is associated with those who are not white. Some researchers attribute distrust in experimental treatment among communities of color to inequities in literacy and historical abuses inflicted on those communities. Consequently, this focus on individual and group behavior neglects to discuss how existing institutional norms and practices may be sustaining ongoing acts of marginalization in how those communities experience the American healthcare system.

White clinicians may also take on the role of clinical gatekeepers, where their distrust of new treatments and expensive medications can undermine positive perceptions of medical institutions. In doing so, clinical gatekeepers prevent their patients from accessing experimental procedures, such as stem cell transplants, and reinforce the perception of whiteness as akin to trust. At the same time, charismatic research enthusiasts can also play a key role in attempting to alleviate mistrust of medical institutions. However, they often fail to motivate assessments of how those institutions impact the communities from which they strive to recruit for experimental research.

These findings were derived from a two-year (2005-2007) mixed-method study conducted by the California Stem Cell Research and Cures Initiative and the California Institute for Regenerative Medicine. As a “training fellow” formally affiliated with the agency during that time, Dr. Benjamin engaged in an extensive range of activities throughout the agency. These activities included shadowing physicians, observing patients’ visits to clinics, and observing discussions between medical staff. 

Conclusions

Dr. Benjamin argues that the racialized cultural concept of trust in biomedicine reinforces existing inequities in how science impacts different groups of people. Further, the binary perception of trust, which associates whiteness with trust and distrust with people of color, also plays a role in defining the institutional norms of the scientific community. Therefore, whiteness has been framed as an ideal, and distrust of medical institutions has become a perception in need of treatment. 

Whiteness goes beyond physical and cultural traits and serves as a symbol of a ‘calculating modern rationality’. With ongoing cases of people of color systematically denied access to high-quality healthcare services even after heeding medical institutions’ calls to serve as research participants, communities of color may be justified in harboring distrust of those scientific and medical institutions.