Dylan's Story: Name and Personal Health Information Released for Research Study Without His Permission

Posted March 18, 2005

Dylan's Story: Name and Personal Health Information Released for Research Study Without His Permission

Health Stories

Posted: March 18 2005

Dylan received a phone call at work (by name) that offered him a free cholesterol screening as part of a research study by Astrazenica. He was told that they received his name from a patient list at his health insurance company. Concerned about his name being given for a study without his permission, he contacted his health insurance company. He eventually received a response stating that the company was compliant with State and Federal privacy legislation and the research company obtained a HIPAA Authorization Waiver from an Independent Review Board/Privacy Board in order to complete the study. This meant that the release of Dylan's personal information didn't require his approval.

 

Dylan's name has been changed to protect his privacy.

PRC Further Resources

More PRC Resources

California Consumer Privacy Act

The California Consumer Privacy Act (CCPA) was the first comprehensive consumer privacy law in the United States, in effect since 2020 and broadened in 2023 by the California Privacy Rights Act. It lets Californians see, correct, and delete the personal information businesses collect about them and opt out of its sale or sharing, and it remains the only state law backed by a dedicated regulator, the California Privacy Protection Agency.

Colorado Privacy Act

Colorado was among the first states to let people opt out of online tracking with a single browser signal rather than site by site, a requirement built into the Colorado Privacy Act (CPA) that has been in effect since July 1, 2023. The law gives Coloradans the same core rights to access, correct, delete, and opt out, and it empowers the Attorney General to write detailed rules carrying it out.