Giving Users Control of their Genomic Data
From massive data breaches to sales of private data, users and companies are now 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.
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. 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.”
Consumers need new solutions that provide the benefits of using data at scale without the risk of their data being copied, stolen, or used for ulterior purposes. That’s why Oasis Labs and Nebula Genomics are partnering to give users first-of-its-kind control of their personal genomic data. Sign up for the beta today
Nebula Genomics was founded on the principles of delivering a privacy-first genetic test to market, and now in partnership with Oasis Labs, they’re taking things one step further by leveraging Oasis Lab’s new privacy product, Parcel.
Parcel is a set of privacy-first, data governance APIs designed to give customers better control and oversight into how their data is used. Parcel’s suite of tools enables developers to:
- Securely store sensitive user data
- Define and enforce usage policies over that sensitive data
- Share tamper-proof logs of access history with their users
- Easily deploy an isolated compute environment — called a Secure Enclave — for privacy preserving analysis.
Secure Enclaves are an emerging breed of privacy technology designed to provide confidentiality and integrity to applications and the data they use. Parcel makes developing applications with Secure Enclaves quick and easy, allowing developers to leverage the latest in privacy technology to protect their customer’s data.
Apps that use Parcel also give developers access to Steward, a web app that makes it easy for their customers to manage their data and track usage. Through the Steward app, users can:
- View all apps that have access to their data with Parcel
- Get complete control over how their data is used, and even revoke access at any time
- See a complete, tamper-proof history of how their data is accessed and used through immutable storage of logs on the Oasis Network
The Parcel solution allows businesses to tackle one of the most challenging issues of our time — providing strong privacy guarantees to their customers without compromising the utility of their product. Parcel’s simplified consent and data management combined with privacy preserving compute technology, helps businesses reduce their custody of risk of storing sensitive data, while differentiating their product with stronger privacy guarantees.
As more businesses adopt Parcel, users will have the added benefit of being able to control and monitor their data from one central app — without having to navigate complicated T&C’s and difficult permission flows.
The product integration is straight forward. After a user has purchased their kit and submitted a sample, they visit the Nebula Genomics website to register and receive their results. During kit registration, users have the option of using Parcel to help protect their data.
Users then create an Oasis Steward account, and can review usage policies that describe the analysis that Nebula Genomics will run on their genetic data. In this instance, Nebula Genomics will run an analysis that allows them to provide their users with new variants, risk scores, and research results.
If the user accepts the usage policy, each week, Nebula Genomics will generate new genetic reports based on the latest scientific discoveries.Before the data is analyzed to generate a report, Parcel verifies the user’s permission against their usage policy stored on the Oasis Network. Encrypted genome files are then loaded into a Secure Enclave, where Nebula Genomics runs code to compile the new report.
Users can return to the Oasis Steward app at any time to see a full history of when and how their genomic data was accessed. They can also use the Oasis Steward app to revoke permissions at any time, ensuring they have complete control over their genome data.
Currently, the technology is used to enable secure data analysis to generate personal reports. In the future, Oasis Parcel will also enable Nebula Genomics users to securely share access to their data to participate in research studies.
Setting New Standards in Data Privacy
Together, Nebula Genomics and Oasis Labs hope to set a new standard for responsible data use in the personal genomics industry and provide consumers with first-of-its-kind control and oversight of their genetic data.
If you’re interested in sequencing your DNA and controlling its use with the latest privacy technology, you can buy a kit and sign up to be included in the Beta release here. Oasis Labs and Nebula Genomics plan to roll out a production version to all customers in the coming months.