Title

Privacy, Security, and Nondiscrimination Best Practices for Direct-to-Consumer (DTC) Genetic Testing Companies

Publication Date:
Updated:

Collection Editor(s):

Collection Editor(s)
Name & Degree
Rachele Hendricks-Sturrup, DHSc, MSc, MA
Work Title/Institution
Research Director, Real-World Evidence, Duke-Margolis Center for Health Policy
Name & Degree
Christine Lu, PhD, MSc
Work Title/Institution
Associate Professor, Harvard Pilgrim Health Care Institute and Harvard Medical School

Introduction

The completion of the Human Genome Project opened new doors for business enterprise. One such activity is direct-to-consumer (DTC) genetic testing, or genetic testing offered on a service-driven basis, without the need for a clinician or other intermediary. DTC genetic testing has been, and continues to be, a burgeoning market and source of genetic data for original research that has produced new insights and discoveries in human ancestry and health. However, the data use practices of DTC genetic testing companies, including when and how they share consumer genetic data with third parties, are controversial. Also concerning is the fact that U.S. laws like the Genetic Information Nondiscrimination Act (GINA), which is intended to protect individuals from genetic discrimination by employers and health insurers, contain critical protection gaps (i.e., they do not apply to life, disability, and long-term care insurers). States are then left to create their own laws to fill those protection gaps, such as, for example, CalGINA in the state of California.

As consumers and the media became increasingly aware of law enforcement requests for consumer genetic testing data, the…

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The completion of the Human Genome Project opened new doors for business enterprise. One such activity is direct-to-consumer (DTC) genetic testing, or genetic testing offered on a service-driven basis, without the need for a clinician or other intermediary. DTC genetic testing has been, and continues to be, a burgeoning market and source of genetic data for original research that has produced new insights and discoveries in human ancestry and health. However, the data use practices of DTC genetic testing companies, including when and how they share consumer genetic data with third parties, are controversial. Also concerning is the fact that U.S. laws like the Genetic Information Nondiscrimination Act (GINA), which is intended to protect individuals from genetic discrimination by employers and health insurers, contain critical protection gaps (i.e., they do not apply to life, disability, and long-term care insurers). States are then left to create their own laws to fill those protection gaps, such as, for example, CalGINA in the state of California.

As consumers and the media became increasingly aware of law enforcement requests for consumer genetic testing data, the health care business interests of DTC genetic testing companies, and gaps in existing legal protections like GINA, stakeholders in government, health care, and other sectors sought to develop and/or endorse privacy, security, and nondiscrimination best practices for DTC companies. Several of these companies also convened to develop and endorse privacy best practices. 

This collection includes literature that: 1) examines the privacy policies and practices of major DTC genetic testing companies within the USA, UK, and China (only a few studies have systematically assessed privacy policies to date), 2) proposes genetic data governance, privacy, security, and nondiscrimination best practices and policy approaches aimed at avoiding genetic data misuse in a range of settings, including employment, and 3) explores stakeholder perspectives and social practices regarding the use, misuse, commercialization, and sharing of consumer genetic information. It will be useful to audiences seeking to understand the current state of discussions about privacy, security, and nondiscrimination best practices for DTC genetic testing companies operating globally as well as the perspectives and concerns of diverse stakeholders.

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Collection Header
Privacy Policies and Practices of DTC Genetic Testing Companies
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Stakeholder Perspectives and Social Practices
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Practices and Policies for Preventing the Misuse of Genetic Data
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Tags
data privacy
direct-to-consumer genetic testing
GINA
genetic discrimination

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ELSIhub Collections are essential reading lists on fundamental or emerging topics in ELSI, curated and explained by expert Collection Editors, often paired with ELSI trainees. This series assembles materials from cross-disciplinary literatures to enable quick access to key information.

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