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Direct-to-Consumer Genetic Testing Data Privacy: Key Concerns and Recommendations Based on Consumer Perspectives.
Rachele M Hendricks-Sturrup1, Christine Y Lu2
1Department of Population Medicine, Harvard Pilgrim Health Care Institute and Harvard Medical School, Boston, MA 02215, USA. rachele_hendricks-sturrup@harvardpilgrim.org.
Journal of Personalized Medicine
|May 12, 2019
Summary
Direct-to-consumer genetic testing (DTC-GT) raises privacy concerns. More research is needed to understand consumer expectations and protections for genetic information.
Area of Science:
- Genetics
- Consumer Health
- Bioethics
Background:
- Direct-to-consumer genetic testing (DTC-GT) is increasingly popular.
- Companies leverage collected genetic data, raising privacy issues.
- Controversies surround consumer expectations, industry standards, and privacy perceptions.
Purpose of the Study:
- To highlight recent privacy controversies involving DTC-GT companies.
- To discuss consumer concerns regarding DTC-GT privacy.
- To examine DTC-GT company privacy standards and policy accessibility.
Main Methods:
- Commentary on recent events and relevant studies.
- Analysis of DTC-GT company terms of use and privacy policies.
- Review of consumer privacy concerns in genetic testing.
Main Results:
- Recent events have intensified privacy controversies surrounding DTC-GT.
- Studies show consumers have significant privacy concerns about DTC-GT.
- Many DTC-GT privacy policies are difficult for consumers to understand.
Conclusions:
- Broader discussions and further research are essential.
- Understanding DTC-GT consumer privacy expectations is critical.
- Recommendations aim to advance consumer privacy protections in DTC-GT.
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