The privacy breakdown that betrayed a nation

In the early 1990s, Carletta Tilousi was one of hundreds of people from the Havasupai Nation who gave blood samples to Arizona State University researchers. They hoped to discover why type 2 diabetes was an epidemic in their remote community in the Grand Canyon. The Havasupai never did get any answers about diabetes, and for over a decade they had no idea their blood samples were being used by other researchers for projects that had nothing to do with diabetes. 

Many companies collect personal data - names, birthdays, interests, payment information, and geolocation. But there’s no data more private and sensitive than biological data. So what happens when that information is used without consent?

  Carletta recalls the day she found out the tribe’s samples were being used without consent, the anguish the research caused, and how the Havasupai fought to bring their blood back home.  

Linda Thielova, OneTrust’s Global Data Protection Officer and Head of Privacy Centre of Excellence, explains why the Havasupai's story is no ordinary privacy violation, and how organizations can build trust-driven relationships around data.