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Updated: Dec 23, 2025

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Public Attitudes Toward Direct to Consumer Genetic Testing.

Grayson L Ruhl1, James W Hazel1, Ellen Wright Clayton1

  • 1Vanderbilt University, Nashville, Tennessee, USA.

AMIA ... Annual Symposium Proceedings. AMIA Symposium
|April 21, 2020
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Direct to consumer genetic testing (DTC-GT) offers insights into health and ancestry but raises privacy concerns. Public interest in DTC-GT is high, yet worries about data misuse persist.

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Area of Science:

  • Genomics
  • Bioethics
  • Consumer Health

Background:

  • Direct to consumer genetic testing (DTC-GT) allows individuals to access genetic information without healthcare provider involvement.
  • The growing popularity of DTC-GT contrasts with a lack of defined public attitudes regarding its use and implications.

Purpose of the Study:

  • To investigate public attitudes towards direct to consumer genetic testing (DTC-GT).
  • To understand the perceived benefits and risks associated with DTC-GT services.

Main Methods:

  • A web-based survey was administered to over 1,000 individuals via Amazon Mechanical Turk.
  • Survey questions were developed based on a literature review of existing public views on DTC-GT.

Main Results:

  • Respondents expressed interest in DTC-GT for insights into health, ancestry, and family relationships, and for advancing research.
  • Significant concerns were raised regarding potential privacy infringements by DTC-GT companies and other data users.

Conclusions:

  • Public interest in DTC-GT is substantial, driven by potential personal and research benefits.
  • Privacy risks associated with DTC-GT data are a major public concern that needs to be addressed.