On May 19, 2016, the ACLU filed a complaint pursuant to the Health Insurance Portability and Accountability Act (“HIPAA”) with the U.S. Department of Health & Human Services (“HHS”) on behalf of four patients against Myriad Genetics, a genetic testing laboratory based in Utah. The complaint was filed by patients who have experienced cancer, including breast and bladder cancers, or who are members of families with substantial histories of cancer.
All of the patients received genetic testing from Myriad Genetics in order to determine their hereditary risk for various forms of cancer and guide treatment decisions. The patients later filed requests with Myriad for all of their genetic information.