Date Degree Awarded

Spring 5-16-2020

Degree Type

Open Access Master's Thesis

Degree Name

Master of Science in Human Genetics and Genetic Counseling

First Thesis/Dissertation Advisor

Johanna Schmidt, MS, MPH

Second Thesis/Dissertation Advisor

Emily Quinn, MS

Third Thesis/Dissertation Advisor

Nicholas Gorman, EdD, MPH

Terms of Use & License Information

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Direct to Consumer (DTC) genetic testing has grown in popularity since its inception in 2010. Consumers can now order DTC tests giving them more information on their ancestry, health and ethnicity than ever before. With more information and more consumers taking the tests, this has allowed for the opportunity of unexpected findings to be generated from the tests. Previous studies have shown that consumers can learn about a health risk they were previously unaware of, and this can impact the health management and surveillance practices of consumers receiving them. Additionally, studies have shown that ethnicity results can impact consumers’ previously held perceptions of identity. Ancestry results have the opportunity to reveal misattributed paternity, or differing families of origin than previously known by the consumer, in addition to the discovery of previously unknown close family members. What remains to be determined is the psychosocial effects these unexpected findings have on the consumers who receive them, what they are doing with these results, and how it impacts their daily lives. This exploratory study sought to examine the psychological and social effects of unexpected findings from DTC tests on consumers. This study was conducted via a quantitative survey conducted through Qualtrics, with respondents recruited from the social media platforms of Facebook, Twitter and Reddit. Results found respondents in this study had a high degree of knowledge on genetics and were of above average educational attainment. Respondents main motivation to take a DTC test was personal curiosity, and 42.22% received an unexpected result they felt had implications for their health. Parents were less likely to share their results with their children if they received results they felt were negative in nature. The majority of respondents also elected not to contact a genetic counselor with their results.

Rights Information

2020 Emily A Wiseman

Included in

Genetics Commons