Nebula Genomics announced that it will partner with Oasis Labs to bring a new standard for responsible data use in the personal genomics industry and provide consumers with first-of-its-kind control of their genetic data.
From massive data breaches to sales of private data, users and companies are more concerned than ever with keeping personal health information private and secure. For example, nearly 80% of respondents in a recent Pew Research study noted concern of how businesses were using consumer data. Sensitive information can take the form of electronic medical records, and more recently, personal genomic data.
“Today, it’s incredibly difficult for users to own and control their data in a private and secure way. Consumers need new solutions that provide the benefits of using data at scale without the risk that their data may be taken out of their control,” said Dawn Song, CEO and Founder of Oasis Labs.
“That’s why we’re so excited to work with Nebula. We’re excited to further Nebula’s mission to enable customers to maintain the privacy, ownership, and control of their personal genomic data.”
While direct-to-consumer genetic testing companies have opened up an entirely new world of information on ancestry and disease risk for individuals, many have come under fire for violating user privacy and breaching user trust.
Many incidents have been reported over the past years. For example, one genealogy company was affected by a security breach that compromised personal information of tens of millions of users and another DNA testing company became subject of an investigation by the Federal Trade Commission over its policy for sharing genetic data.
“Those issues have raised widespread privacy concerns that have significantly slowed down the growth of the entire genetic testing industry,” said Nebula Genomics founder and Professor of Genetics at Harvard Medical School, George Church.
“This is a big problem because personal genomics can create a lot of value for the individuals who get tested. Furthermore, if the data is shared with researchers it will enable us to better understand human genetics and possibly help cure diseases.”
Nebula Genomics was founded on the principles of delivering a privacy-first genetic test to market, and now in partnership with Oasis Labs, the company is taking things one step further.
Through Oasis Labs’ privacy-preserving technology and the Oasis Network, a decentralized blockchain, Nebula customers can retain full control over their personal data and manage how their data can be accessed and used. This means that users will be able to keep their data to themselves if that’s what they want. More importantly however, the technology enables much more secure and controlled data use, for example for biomedical research.
“Most people want to contribute to biomedical research, but at the same time are often deterred by privacy concerns. We expect our technology will enable something completely novel to consumers: enabling both privacy and controlled data use at the same time,” said Dawn Song.
Through Oasis Labs’ unique privacy solution Parcel, Nebula’s users will be able to retain ownership and control of their personal genomic data. Data remains confidential, and users can grant access to their data for specific use cases such as generation of reports offered by Nebula or analysis by researchers.
Each time a user’s genome is analyzed — whether it is to provide reports to the user or for medical research — Oasis verifies user’s permission against an immutable ledger. Then, with the user’s permission, the analytics function and encrypted genomic data is loaded into an isolated, blackbox computation environment called a Secure Enclave.
Using a Secure Enclave to run analysis helps ensure that no one can peak at a user’s genetic information during the computation. Nebula users are able to receive reports and, in the future, share data access with researchers, while keeping their personal genomic data confidential and protected.
Nebula’s users will be able to monitor access to their data via an Oasis app, which will maintain a log of every action taken with their data on the Oasis Network.