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NEBULA startup becomes first consumer DNA company to offer anonymous sequencing: no name, address or CC

nebula anonymous sequencing

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#1 Engadin

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Posted 26 September 2019 - 06:15 PM


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S O U R C E :    STAT

 

B E H I N D   P A Y W A L L   P R I M A L   S O U R C E :    Data privacy in the age of personal genomics @ Nature Biotechnology

 

 

 

 

 

 

The upstart direct-to-consumer DNA-testing company Nebula Genomics announced on Thursday that it will offer anonymous genome sequencing, becoming the first to do so amid public concerns about the privacy of genetic data and law enforcement use of public DNA databases to identify suspects.

 

Customers will be able to purchase Nebula’s whole-genome sequencing “without sharing their name, address, or credit card information,” said Nebula co-founder and chief scientific officer Dennis Grishin.

 

The technology exists to do that, he and the company’s other co-founders — Harvard University biologist George Church and Kamal Obbad — explain in a paper in Nature Biotechnology, published on Thursday. To pay for testing, customers would use a cryptocurrency such as bitcoin or a prepaid credit or debit card. They would use a nameless P.O. box to receive the sample collection kit. To access results, customers would create an email address not traceable to them (Nebula recommends ProtonMail).

 

Genetic privacy experts are taking a wait-and-see attitude.

 

“Part of me thinks it’s a little bit silly, offering anonymous sequencing,” said legal scholar and geneticist Ellen Wright Clayton of Vanderbilt University. “Of course it provides some protection, but if you share it with your doctor, your anonymity is over,” since medical records can be and have been hacked. Anonymity, however, would make it nearly impossible for law enforcement to obtain data they could use to identify sequencing company’s customers and their relatives, Clayton pointed out.

 

Part of the lukewarm response to Nebula’s pitch reflects the fact that testing companies, as well as academic researchers, already “de-identify” genetic data. That is, they remove the name of the person it came from and label it with a number or other code. 23andMe, for instance, does so before sharing data (with customers’ consent) with GlaxoSmithKline (GSK), which mines it for drug discovery.

 

But much genomic data can be re-identified fairly easily, scientists reported last year. “Enabling individuals to remain pseudo-anonymous would eliminate the dependence on data deidentification” and the accompanying risk of re-identification, the Nebula team wrote.

 

That “pseudo-” before “anonymous” reflects the fact that there is no perfect system of genetic anonymity, Grishin said. There are real names behind blockchain addresses, the technology used for cryptocurrency transactions, so bitcoin is not completely anonymous. And bribing a postal clerk to get the name on an anonymous P.O. box, while perhaps more likely in the next Jason Bourne flick than real life, isn’t impossible.

 

Those and other possible workarounds left rivals unimpressed with the promise of anonymity. “It’s a cheap way of doing marketing,” said Rodrigo Martinez, chief marketing officer of Veritas Genetics, which once but no longer works with San Francisco-based Nebula (and is also a George Church-founded company).

 

DNA samples that physicians or researchers send to Veritas for testing are already anonymous, he said, and the company encrypts its data in a cloud account. “There’s no way” someone hacking into the database “could put the genetic data together with a name,” he said.

 

 

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Edited by Engadin, 26 September 2019 - 06:26 PM.






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