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Open AccessCommentary

Direct-to-Consumer Genetic Testing Data Privacy: Key Concerns and Recommendations Based on Consumer Perspectives

Department of Population Medicine, Harvard Pilgrim Health Care Institute and Harvard Medical School, Boston, MA 02215, USA
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J. Pers. Med. 2019, 9(2), 25; https://doi.org/10.3390/jpm9020025
Received: 27 March 2019 / Revised: 29 April 2019 / Accepted: 6 May 2019 / Published: 9 May 2019
(This article belongs to the Collection Genomic Medicine and Policy)
Direct-to-consumer genetic testing (DTC-GT) companies are engaging health consumers in unprecedented ways and leveraging the genetic information they collect to further engage health companies. This has produced controversy about DTC-GT consumer expectations, standards, and perceptions of privacy. In this commentary, we highlight recent events involving DTC-GT companies and controversy about privacy that followed those events and discuss recent studies that have explored DTC-GT consumer concerns about privacy. We discuss DTC-GT company standards of upholding consumer privacy and the general accessibility of DTC-GT company terms of use agreements and privacy policies that are written at reading levels above that of many consumers. We conclude that broader discussions and more research are needed to identify DTC-GT consumer concerns about and expectations of privacy. We anticipate that our recommendations will advance discussions on consumer privacy expectations and protections in an era of increasing engagement in DTC-GT. View Full-Text
Keywords: genetic testing; direct-to-consumer; privacy; genetic information; genomic medicine; consumer protections genetic testing; direct-to-consumer; privacy; genetic information; genomic medicine; consumer protections
MDPI and ACS Style

Hendricks-Sturrup, R.M.; Lu, C.Y. Direct-to-Consumer Genetic Testing Data Privacy: Key Concerns and Recommendations Based on Consumer Perspectives. J. Pers. Med. 2019, 9, 25.

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