Nebula Genomics to Provide Anonymous Genetic Testing

318
The Regeneron Genetics Center (RGC)

Consumer DNA testing company Nebula Genomics is offering a new anonymous genome analysis service it says will improve customers’ data safety. Nebula is the first personal genomics company to offer anonymous testing, the company said. Since data safety is one of peoples’ main concerns about genomic testing, this could differentiate Nebula from its competitors.  Further details of the service are described on Nebula’s blog.

The company points out that “Anonymous genetic testing can eliminate several potential vulnerabilities individuals are exposed to when purchasing genetic testing services. Most importantly, enabling individuals to remain anonymous would eliminate the dependence on data de-identification by personal genomics companies prior to data sharing with researchers.

“While purchases of genetic testing services can be effectively anonymized, genomic data itself cannot, since it contains unique, inheritable genetic markers. Thus, because genomic data anonymization alone is insufficient to protect privacy, genomic data sharing must occur in a controllable, transparent and privacy-preserving manner.”

Nebula has enabled anonymous sequence banking through a variety of services such as transactions with cryptocurrencies relying on blockchain addresses that have no connection to real-life identities such as name, address or bank accounts. For users who do not own cryptocurrencies, the company recommends using a prepaid credit card, delivering its saliva collection kits to USPS PO boxes, and using an email address that is not associated with any personal information and a VPN during purchase and registration.

Nebula’s main service provides consumers with a means to have their genomes sequenced at no cost, in exchange for sharing the data with companies. Customers will now also be able to purchase whole-genome sequencing, submit their sample, and receive their results, without having to reveal any information about themselves such as name, address or credit card number. The company’s new $250 service allows customers control access to their data using encrypted keys, allowing them to provide consent on a case-by-case basis.

“Today we have presented our vision for privacy-focused personal genomics and with our launch of anonymous genetic testing we are taking a step towards turning this vision into reality,” said Dennis Grishin, chief scientific officer of Nebula in a press release.

In an article published this week in Nature Biotechnology, Nebula’s co-founders describe how various cryptographic techniques can be applied to make sharing of personal genomic data controllable, transparent and secure. The article also calls for direct-to-consumer personal genomics companies to put their customers in control of their personal data in order to address prevalent privacy concerns that have become a barrier to wider adoption of genetic testing. As a result, the growth of the direct-to-consumer genetic testing has recently slowed down significantly.

Nebula was co-founded by Grishin and Harvard University geneticist George Church. The company lets individuals sell their DNA data to drugmakers and other organizations profit by selling their DNA.

This site uses Akismet to reduce spam. Learn how your comment data is processed.