Privacy, Biological Relatives, and at-Home DNA Testing

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  • At-home DNA testing remains popular amongst individuals today. These direct-to-consumer services come with several privacy risks, that can extend far beyond the individuals taking the test. How do participants attribute risk to biological family members? How do users and non-users differ in comfort with their data being shared, and their understanding of privacy risks? How do privacy perceptions differ for ancestry and health data? To investigate these questions, we conducted a 2x2 survey, and discovered non-users were significantly more privacy conscious, and that health data was considered more beneficial overall. We then interviewed 10 biological family members of users who had not taken a test themselves; though many were unconcerned or indifferent towards privacy, privacy-conscious participants were frustrated by, and resigned to, the loss of control over their data. We discuss our findings, the implications of our research, offer recommendations to improve privacy, and identify areas for future research.

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  • Copyright © 2023 the author(s). Theses may be used for non-commercial research, educational, or related academic purposes only. Such uses include personal study, research, scholarship, and teaching. Theses may only be shared by linking to Carleton University Institutional Repository and no part may be used without proper attribution to the author. No part may be used for commercial purposes directly or indirectly via a for-profit platform; no adaptation or derivative works are permitted without consent from the copyright owner.
Date Created
  • 2023


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