Document Type

Dissertation

Date of Award

2022

Degree Name

Doctor of Philosophy (PhD)

Department

Health Science

First Advisor

Amy Elliott

Abstract

Provision of individual research results to participants is a critical component of the research process. While there is general interest amongst researchers in returning individual research results, a lack of understanding of the personal value of results for participants has hindered the return of individual results. This is especially true for non-genomic research results such as surveys, laboratory test results, or imaging results. This study examined the participant perspectives on the return of individual research results in a diverse cohort of 1587 mothers currently enrolled in the Environmental Child Health Outcomes (ECHO) program. A mixed-methods approach was used to delineate the influence of result type and standardization status (availability of normative data) on the perceived value of individual research results. Racial differences between American Indian and White participants with respect to perceived value of individual research results were examined. Additionally, the study explored the process by which participants make decisions regarding value of individual research results. Findings from this study indicate that irrespective of result type, participants attributed higher perceived value to individual research results that were framed within a normative context than those that were not framed within a normative context. No significant differences were found between American Indian and White participants with respect to perceived value of individual research results. Qualitative interviews showed that participants’ process of attributing value to individual research results is influenced by others’ experiences including advice from the researcher.

Subject Categories

Medicine and Health Sciences

Keywords

individual research results

Number of Pages

101

Publisher

University of South Dakota

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