Genetic Privacy in the Age of Consumer and Forensic DNA Applications

In Tomas Zima & David N. Weisstub (eds.), Medical Research Ethics: Challenges in the 21st Century. Springer Verlag. pp. 115-129 (2022)
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Abstract

U.S Courts have ruled that one’s genetic information is covered by the Fourth Amendment to the Constitution, which affords persons protection against unreasonable search and seizures of their personal property and personal space. The Genetic Information Non-Discrimination Act (GINA) protects people from discrimination in health insurance and employment based on genetic information. The European Union issued the General Data Protection Regulation, which included genetic information. Yet with the development and application of DNA identification in criminal investigations, governments have amassed the genetic information of millions of people. And, with the rise of consumer genetics, especially since DNA ancestry tests went commercial in 2000, dozens of companies have amassed millions of personal DNA samples that are sold to various companies for analysis beyond their intended genealogical purpose. Where is the balance between the protection of people’s genetic information and the commercial and forensic acquisition of personal genetic data? How can genetic information be protected under the Fourth Amendment’s privacy provisions, as well as privacy laws in other countries, and yet be so whimsically distributed throughout society, so easily acquired by police, and voluntarily released to companies?

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