The National Institutes of Health has agreed to safeguard Henrietta Lacks's family genetic privacy while still allowing research on the famous HeLa cells. During her fight against an aggressive form of cervical cancer in the 1950s, Henrietta Lacks's cells were given to scientists, without her consent, for experimentation because of their ability to replicate in a lab setting. Her cells are still used today for scientific research. EPIC previously submitted comments to the Department of Health and Human Services and argued for stronger privacy protections for genetic data. More recently, EPIC filed a friend of the court brief with the Supreme Court in Maryland v. King arguing for limited law enforcement access to DNA. For more information, see EPIC: Maryland v. King and EPIC: Genetic Privacy.
Share this page:
EPIC relies on support from individual donors to pursue our work.
Subscribe to the EPIC Alert
The EPIC Alert is a by-monthly newsletter highlighting emerging privacy issues.