By offering a way for customers to have their DNA sequenced without any fear of being identified, Nebula Genomics hopes to revive interest in personal genetics
Nebula Genomics is introducing a new model for genetic sequencing that emphasizes privacy and consumer ownership of data. It does this by allowing customers to anonymously submit their DNA and pay for sequencing without including any personally identifiable information. In a twist that will interest medical laboratory professionals, Nebula is using blockchain as part of this gene testing service.
Just as all clinical laboratories and anatomic pathology groups are responsible for the privacy of their customers’ protected health information (PHI), so too must personal genomics companies like Nebula, 23andMe, and Ancestry, ensure their customers’ privacy, protect their PHI, and remove all identifiable information from customers’ genetic data before sharing it with research labs and pharmaceutical companies.
Additionally, in theory, customers can opt to have all of their personal information deleted (aka, scrubbed) from genetic companies’ databases. Recent high-profile reports, however, have shown this isn’t always easy or successful, leading customers to fear how their private information could be seen and used. (See Dark Daily, “Erasing ‘DNA Footprint’ from the Internet Proves Difficult for Consumers Who Provide Data to Genetic Testing Companies,” December 24, 2018.)
For all the recent advances in sequencing, there remain serious concerns about privacy, and there’s no information more personal than that contained in a person’s DNA.
“People started seeing services they use every day not working the way they were intended. And it’s had a strong whiplash in the genomics space,” Kevin Quinn, the Chief Product Officer at Nebula Genomics, told Wired.
Thus, Nebula’s anonymous DNA sequencing kit could be the answer. The concept is, rather than risking not completely removing all of a customer’s identifying information from the data, don’t receive it in the first place.
“It doesn’t need to be de-identified on our end because it’s already intrinsically separate,” Quinn told Wired. “And that’s never really been done before.”
Blockchain, Privacy, and Lawsuits
In 2018, Nebula began using blockchain to enable its customers to control the use of their genetic data. In addition, customers can earn money from research companies that are willing to pay for their genetic data. This exchange of information for cash has been at the heart of blockchain since the technology’s inception in the cryptocurrency industry in 2008. Since then, blockchain has found use in other industries as well, including healthcare.
Nebula’s terms of privacy states: “Nebula uses blockchain technology to improve transparency and control over genetic data. We are currently in the process of developing our blockchain infrastructure to record user consent settings and requests for access to user data. This will be designed to increase transparency and immutability of data access request and user consent for sharing data. By storing data requests and consent settings on the blockchain, Nebula hopes to enable users to audit any transactions involving their data to ensure that all of the data sharing is acceptable and no misuse of data has taken place.”
Pharmaceutical and research companies are interested in genetics information to drive the development of new drugs. In order to profit, though, these companies need information from millions of genetic tests.
However, 23andMe co-founder and CEO Anne Wojcicki said during a Wall Street Journal (WSJ) Tech Health conference that growth in the genetic company’s sales have slumped, possibly because social media has made people more aware that their private genetic data may not be secure.
“The market definitely slowed last year,” she said. “My hypothesis is that you have some of the effect from Facebook, people concerned about privacy, you had Golden State killer and so people pause.”
Can Clinical Laboratories Be Held Liable for Any of Several Potential Issues?
Of greater concern to healthcare service providers, however, may be the potential for lawsuits.
People who pay for genetic tests through companies like 23andMe may not be aware that they are allowing their genetic information to be shared with other companies. Any time sensitive information is stored, there’s the possibility of it being exposed. This can lead to unique problems for clinical laboratories, as a Science article titled, “Medical DNA Sequencing Leads to Lawsuits and Legal Questions,” describes.
“What is a doctor to do when a patient has results from a direct-to-consumer testing company like 23andMe and asks what implications they have for their health? Or when a lab notifies a doctor that a genetic variant their patient carries, thought meaningless three years ago, is now known to be harmful, but they can’t locate the patient? Can a testing lab be held liable for not regularly reviewing the scientific literature, to track science’s understanding of the gene variants it tests for?”
Anonymity and Blockchain Could Be the Solution
Complete anonymity could solve the sticky issue of privacy and how to maintain it, and Nebula’s use of blockchain provides the mechanism by which customers control the use of their genetic data.
Depending on how Nebula’s use of blockchain works, the model could become useful for clinical pathology laboratories, where the requirement for privacy is not optional. If blockchain turns out to be a secure, transparent method of transmitting genomic sequencing results, then it also may turn out to be a method for transmitting other types of lab test results, which typically contain far less data.
Blockchain continues to be a technology of interest to pathology laboratories. Nebula’s using it to maintain their customers’ anonymity while simultaneously enabling them to control the use of their genetic data is worth watching. It could become a way for patients to access clinical laboratory test results securely and privately.