Direct to Consumer or Direct to All: Home DNA Tests and Lack of Privacy Regulations in the United States

By: Karen J. Kukla

From Volume 13 (2023-2024)

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Although the U.S. has some measures of privacy protection for genetic data, the lack of a comprehensive approach to protecting direct-to-consumer genetic testing results in privacy violations for both consumers and their relatives. This essay explores the critical need for the U.S. government to address these privacy violations and argues that the U.S. should approach the problem and strategize a solution similar to the European Union’s (EU) General Data Protection Regulation (GDPR). Part I identifies current United States law, both federal and state regulations that address DTC-GT and genetic privacy. Part II examines the lack of regulation surrounding current DTC-GT companies and the potential to abuse individuals’ privacy. Finally, Part III explores various solutions to resolve genetic privacy issues in the U.S. and advocates for the federal government to adopt a comprehensive regulatory framework like the EU or California.