DNA testing firm offers new level of privacy—anonymous genomes

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Nebula Genomics, a DNA testing company, is offering to step up protection against improper use of customers’ data with an anonymous genome analysis service.

Using cryptocurrencies like Bitcoin for payment and eliminating any identifying information from transactions, the service alleviates concerns about hacking or DNA data security breaches, said Dennis Grishin, Nebula’s chief scientific officer. The approach was described in an article released Thursday by the journal Nature Biotechnology.

Co-founded by Grishin and Harvard University geneticist George Church, Nebula is helping individuals sell their own DNA data to drugmakers and other companies looking to tailor products to the cellular code that guides construction of organs and tissues. Consumers are increasingly wary that their data will be shared, exposed or sold without their knowledge, Grishin said.

“If you look at the comments on our ads, they often say, ‘You’ll just sell my data,’” he said. “We want to show our customers that we care about this and we’re doing something.”

The $250 service, unlike others, lets customers control access to their data using encrypted keys that allow them to consent to use on a case-by-case basis. Nebula also has a service that enables consumers to have their genomes sequenced for free, in exchange for sharing the data with companies.

Concerns about genetic privacy arose as companies such as 23andme Inc., which analyzes patients’ ancestry and health characteristics, began selling their DNA data to drugmakers. These companies also want better data protection, because it gives consumers more confidence to share their information, Grishin said.

Companies such as U.K.-based Sensyne Health, which brokers health data to drug and device makers, are using a variety of approaches to ensure that patients’ information remains secure. Sensyne only allows its data, obtained anonymously from National Health Service patients, to be analyzed by its own employees in a secure “cold room.” Clients see only the results of the analysis, not the data itself.

Bloomberg News