Date of Completion
Dr. Mona Sinha
The direct-to-consumer genetic testing market is predicted to reach $340 million by 2020 (Seward, 2018). DTC genetic tests (DTC-GTs) are DNA kits purchased and taken by consumers in their homes to learn about their ancestry, trait/disease propensity, etc. Although, many companies state in their privacy policies that they share genetic information with third parties, it’s not evident that consumers completely understand how their information will be used e.g., for research or law enforcement. Prior research has found some ethnicities have low awareness of DTC-GTs e.g., African Americans and Hispanic Americans (Salloum et. al, 2018) but it’s not clear if this also impacts their privacy concerns. The role of ethnicity is important due to historical reasons e.g., the case of Henrietta Lacks (Rao, 2016), medical experimentation on slaves, and the Tuskegee Syphilis Study (Gamble, 1997). This research aims to address this research gap, by examining the impact of ethnicity and attitudes toward privacy on consumers’ purchase of DTC-GTs. After reviewing literature, the researcher developed a conceptual model and testable hypotheses. The researcher then surveyed 103 participants and deployed statistical techniques e.g., t-tests and correlation analyses. Based on the study’s findings, non-users of DTC-GTs don’t possess higher privacy concerns about genetic testing than users. Also, while African Americans are more aware of unethical medical experimentation involving African Americans, the study revealed they’re unlikely to have higher privacy concerns about genetic testing and as likely to purchase DTC-GTs. This research contributes to our understanding about privacy-related challenges in the rapidly evolving DTC-GT market.
Deinde-Smith, Queen, "Privacy Concerns About Genetic Testing: Does Ethnicity Matter?" (2019). KSU Journey Honors College Capstones and Theses. 24.