Building a World Where Data Privacy Exists Online

“You can actually have the integrity that the blockchain ledger provides and also you can have privacy or confidentiality for the smart contract execution that’s provided by the secure enclave,” said Professor Song, who speaks rapidly as if rushing to keep pace with her thoughts. “No central server ever sees the data.”

Oasis Labs has been building a platform to support enterprises and developers. They have begun a pilot with Nebula Genomics, a direct-to-consumer gene-sequencing company, that offers whole genome sequencing reports on ancestry, wellness, and genetic traits with weekly updates. Using Oasis Labs’ privacy-preserving tools, Nebula customers will retain full control and ownership over their genomic data, while enabling Nebula to run specific analysis on the data without exposing the underlying information.

Another application, called Kara, a collaboration with Dr. Robert Chang at the Stanford University School of Medicine, gives eye patients the option to share retina scans and other medical data with researchers who use the data to train machine-learning models to recognize disease.

Part of the Kara project is studying what kind of incentives patients will find meaningful in return for contributing their data for medical research.

“Her approach is unique from other data aggregators,” Dr. Chang said. “This project is really asking the important question — who really owns the data?”

Someday, Professor Song believes, people will have an individual revenue stream from their data. It may not be significant on a monthly or even annual basis, but the fees that accumulate over the course of a lifetime from companies using personal data could contribute to retirement savings, for example. Or revenue from groups of people could be used to fund particular causes. The unlocking of data, meanwhile, could lead to improved services for consumers.

“Today, companies are taking users’ data and essentially using it as a product; they monetize it,” Professor Song said. “The world can be very different if this is turned around and users maintain control of the data and get revenue from it.”

Craig S. Smith is a former correspondent for the Times and now hosts the podcast Eye on A.I.