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Publication Date

Spring 2015

Degree Type

Thesis - Campus Access Only

Degree Name

Master of Arts (MA)

Department

Anthropology

Advisor

Roberto Gonzalez

Keywords

clinical trial, distrust, ethnicity, multiple sclerosis, race, risk

Subject Areas

Cultural anthropology

Abstract

Multiple sclerosis (MS) patients from different racial and ethnic groups are equally likely to participate in clinical trials despite the significant risk that experimental drugs pose to their health. This is in contrast to existing literature which points to minority group distrust of medical research as a reason for low clinical trial participation rates. Given this disparity, the purpose of this thesis is to understand the complexities surrounding MS clinical trial participation. A mixed methods approach was utilized, including: 1) review of archival data for racial and ethnic group clinical trial participation rates; 2) an electronic survey to capture MS patient exposure to and knowledge of clinical trials; and 3) semi-structured interviews to elucidate perceptions of clinical trial participation. Despite the predicted influence of distrust on clinical trial participation rates, this study identified no differences in motivations to participate among racial or ethnic groups. Focusing only on minority distrust as a reason for low clinical trial participation may overlook true patient motivations which are mediated, not by arbitrary categories of race and ethnicity, but by balancing the complicated interactions of distrust, risk perception and risk acceptance, with the perceived benefits of clinical trial participation. These motivations are situated within the context of structural barriers that can prevent clinical trial participation, such as health care access and clinician bias.

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