Accessing your own genomic data is a civil right but requires strategies to manage safety

Accessing your own genomic data is a civil right but requires strategies to manage safety

January 4, 2018, Cell Press

Credit: CC0 Public Domain

The Genetic Information Nondiscrimination Act of 2008, or GINA, expanded individuals' access to genetic information by forcing changes to the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule. These amendments, finalized in 2013 and 2014, gave Americans a civil right to obtain copies of their own genetic test results stored at HIPAA-regulated laboratories. In a commentary published January 4 in the American Journal of Human Genetics, Barbara J. Evans, Alumnae College Professor of Law and Professor of Electrical and Computer Engineering at the University of Houston, describes how civil rights and safety concerns collided after these changes and offers strategies to reconcile the two.