FACTORS IN GENETIC DATA SHARING DECISIONS
Open Access
- Author:
- Aurite, William Robert
- Graduate Program:
- Informatics
- Degree:
- Doctor of Philosophy
- Document Type:
- Dissertation
- Date of Defense:
- September 20, 2019
- Committee Members:
- Prasenjit Mitra, Dissertation Advisor/Co-Advisor
Prasenjit Mitra, Committee Chair/Co-Chair
Andrea Tapia, Committee Member
Lynette Yarger, Committee Member
Alyssa Ann Gamaldo, Outside Member
Mary Beth Rosson, Program Head/Chair - Keywords:
- Genetic Data Sharing
Genetic Data
Genetic Data Privacy
Personal Privacy
Interdependent Privacy - Abstract:
- Recent technological advances have transformed genomic and genetic research. Genome- wide association studies enable scientists to identify specific genetic variants that may be linked to risks for certain diseases. The ability of these studies to find new associations is dependent on both the availability and quantity of genetic data. The availability of genetic data is predicated, in part, by the willingness of an individual to share genetic data. Despite the importance of data sharing in such studies, not much is known about the factors that may impact genetic data sharing decisions. Personal and interdependent privacy considerations in these decisions are also not well understood. Direct-to-Consumer (DTC) genetic testing services are an emergent and potentially rich source for genetic data. In order for this data to be leveraged in a research domain, users must first elect to share their data. The number of individuals subscribing to DTC services is expected to increase, further necessitating the need for a more complete understanding of factors contributing to sharing decisions. This dissertation is structured to address aforementioned and other lines of inquiry in the form of five studies. The first study in this dissertation examines privacy concerns and likely use factors that may help shape an individual's decision to take a genetic test. The second, third, and fourth studies develop numerous regression and classification models for the intention to share genetic data. Specific focus is paid to the socioeconomic, sociodemographic, and relevant experience factors. The fifth study presented in this dissertation addresses an important aspect of genetic research, diversity. In this study, Indigenous perspectives on DTC genetic testing services are explored with careful attention paid to barriers and motivators of involvement in genetic testing. Together, these studies form a comprehensive understanding of the factors that impact genetic data sharing decisions. This dissertation and its findings have implications for both medical and commercial research, specifically in regards to targeted recruitment and data acquisition strategies.