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April 18, 2019

Direct-to-Consumer Genetic Testing and Potential Loopholes in Protecting Consumer Privacy and Nondiscrimination

Author Affiliations
  • 1Precision Medicine Translational Research (PROMoTeR) Center, Department of Population Medicine, Harvard Pilgrim Health Care Institute and Harvard Medical School, Boston, Massachusetts
  • 2University of Iowa College of Law, Iowa City
JAMA. 2019;321(19):1869-1870. doi:10.1001/jama.2019.3384

A 2018 report on disparities in access to genomic medicine by the National Academies of Science, Engineering, and Medicine raised a concern that growing use of direct-to-consumer (DTC) genetic testing information by law enforcement could affect how individuals perceive the benefits and risks of genetic testing.1 Perceived risks could contribute to feelings of distrust or discrimination among individuals, especially among vulnerable social groups or populations, such as immigrants, prisoners and former convicts, sexual minorities, and racial/ethnic minorities. Distrust can dissuade individuals from using genomic medicine. This Viewpoint examines important issues of privacy (freedom from observation or disturbance) and discrimination (unjust or prejudicial treatment based on immutable factors) in the era of increasing use of DTC genetic testing.

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