Date of Award

2018

Degree Type

Thesis

Degree Name

Master of Arts (MA)

Department

Sociology

Abstract

Racial and ethnic minority groups are underrepresented in medical and health-related survey research, with implications for the generalizability across diverse populations of evidence gleaned from these studies. However, there is little known about the respondents’ reasons for participating—or not—in medical research studies, and how these reasons might vary across race/ethnicity, age, gender and education. In this thesis, I extend previous research by looking at data collected from cognitive interviewing techniques to examine 1) participants’ reported likelihood of participating in five increasingly invasive types of data collection, including research studies that ask participants to answer questions about themselves or provide samples of saliva, blood, tissue, or cerebrospinal fluid; 2) the reasons participants provide for participation; and 3) the reasons participants provided for non-participation. Cognitive interviews were conducted with 64 participants in a convenience quota sample crossing dimensions of race/ethnicity, gender, age, and education. I examined patterns in respondents’ likelihood of participating in increasingly invasive medical research and examine whether these patterns vary across groups. I coded the reasons respondents provided for their likelihood of participation through an inductive, iterative, and systematic process, from the interview transcripts. The qualitative analysis consisted of identifying emerging themes throughout all cases. By focusing on respondents’ explanations for participation-or not-in various types of medical research, I was able to establish reasons for participation-or not-in medical research studies that collect personal information and biomarkers such as saliva, blood, tissue samples, and cerebrospinal fluid, with specific attention to variations by age, gender, race/ethnicity, and education attainment.

Creative Commons License

Creative Commons License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.

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