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Do I Spit or Do I Pass?: Perceived Privacy and Security Concerns of Direct-to-Consumer Genetic Testing

Authors:

Sukeshini A. Grandhi,

Linda PlotnickAuthors Info & Claims

Proceedings of the ACM on Human-Computer Interaction, Volume 6, Issue GROUP

Article No.: 19, Pages 1 - 26

https://doi.org/10.1145/3492838

Published: 14 January 2022 Publication History

Abstract

This study explores privacy concerns perceived by people with respect to having their DNA tested by direct-to-consumer (DTC) genetic testing companies such as 23andMe and Ancestry.com. Data collected from 510 respondents indicate that those who have already obtained a DTC genetic test have significantly lower levels of privacy and security concerns than those who have not obtained a DTC genetic test. Qualitative data from respondents of both these groups show that the concerns are mostly similar. However, the factors perceived to alleviate privacy concerns are more varied and nuanced amongst those who have obtained a DTC genetic test. Our data suggest that privacy concerns or lack of concerns are based on complex and multiple considerations including data ownership, access control of data and regulatory authorities of social, political and legal systems. Respondents do not engage in a full cost/benefit analysis of having their DNA tested.

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Cited By

Hsieh EMorrissey BChiareli I(2024)The Landscape of Direct-To-Consumer Genetic Testing in Reproductive Health Contexts: An Analytical Framework of Stakeholders and Their Competing MotivationsHealth Communication10.1080/10410236.2024.231260739:13(3211-3224)Online publication date: 6-Feb-2024
https://doi.org/10.1080/10410236.2024.2312607

Index Terms

Do I Spit or Do I Pass?: Perceived Privacy and Security Concerns of Direct-to-Consumer Genetic Testing
1. Human-centered computing
  1. Human computer interaction (HCI)
    1. Empirical studies in HCI

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cover image Proceedings of the ACM on Human-Computer Interaction

Proceedings of the ACM on Human-Computer Interaction Volume 6, Issue GROUP

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January 2022

992 pages

EISSN:2573-0142

DOI:10.1145/3511803

Editor:
Jeff Nichols
Apple Inc., United States

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Publication History

Published: 14 January 2022

Published in PACMHCI Volume 6, Issue GROUP

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Cited By

Hsieh EMorrissey BChiareli I(2024)The Landscape of Direct-To-Consumer Genetic Testing in Reproductive Health Contexts: An Analytical Framework of Stakeholders and Their Competing MotivationsHealth Communication10.1080/10410236.2024.231260739:13(3211-3224)Online publication date: 6-Feb-2024
https://doi.org/10.1080/10410236.2024.2312607

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