Date of Award

2017

Document Type

Open Access Thesis

Department

Genetic Counseling

Sub-Department

School of Medicine

First Advisor

Whitney Dobek

Abstract

Public awareness of the role of genetics in disease continues to expand along with the use of direct-to-consumer genetic testing (DTC-GT). One subset of customers taking advantage of the growing DTC-GT market is adoptees. Prior research has shown that adoptees appear to be more motivated than non-adoptees to learn about their genetic disease risk but have similar responses to health-related information acquired through DTC-GT. In this exploratory qualitative study, fourteen adoptees were asked about their motivations for pursuing DTC-GT; satisfaction with results; emotions throughout the process; and interest in meeting with a genetic counselor. Motivations for pursuing DTCGT fell into three categories: 1) identity-seeking, 2) a desire for health information, and 3) general curiosity. Adoptees reported a variety of emotional responses to DTC-GT but had more profound emotional reactions to ancestral information, related to both ethnicity and biological familial connections. Finally, the majority of adoptees found value in meeting with a genetic counselor, either for themselves or for their family given certain circumstances. This study highlights adoptees’ experiences in their pursuit of genetic information. By understanding this population’s journey with DTC-GT, genetic counselors and genetics professionals can be better equipped to address the concerns and emotions of this population that is receptive to the idea of genetic counseling.

Rights

© 2017, Anna Childers

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