Your medical and health history may become more than just a blueprint for your doctor’s actions, if a new partnership succeeds.
The San Francisco-based Nebula Genomics startup was co-founded by genomics pioneer and Harvard professor George Church, and the Hong Kong-based Longenesis was launched by bioinformatics expert and anti-aging researcher Dr. Alex Zhavoronkov.
Nebula co-founder Kamal Obbad told me that “both companies have had similar goals” of creating such a marketplace, but Longenesis has been focused on clinical data, while Nebula has concentrated on genomic data.
Obbad said a public beta is expected to be released by end of summer, with both a consumer and enterprise version.
Consumers will be able to visit the website of the marketplace, branded as Nebula Genomics, and enter health, medical and genomic data — test results that are self-reported or from a lab, electronic health records or clinical data. Nebula will also offer a genome testing service, where it sends the consumer a collection kit and returns a genomic sequencing, which can be made available to the marketplace.
The consumer data will be anonymized, Obbad said, and consumers will grant consent that is compliant with the newly implemented General Data Protection Regulation (GDPR). The consent forms, he said, will specify the exact uses and the permitted vendors, including whether the anonymized data will be available to medical research firms on an individual or aggregate basis.
Why sell your medical data?
Of course, it might be impossible to anonymize a genomic sequence, since that is literally what defines an individual. But Obbad noted that all the health/medical data is encrypted, and the owner of the data possesses one of the two required keys.
Obbad said there are currently “no plans” to allow the data to be used for ad targeting, but added that, even if it were eventually allowed for such a use, it would only become available after the owner had granted consent.
Consumers will provide this data, he said, for one of three possible reasons. First, they might want to make money, with prices set by the buyers and payment in cryptocurrency.
Second, they might want to participate in a medical study, or, third, they might want to receive additional services, such as having their genomic data analyzed. The Nebula marketplace is offering a platform on which outside developers can create and offer third-party services.
Blockchain technology is being employed, Obbad said, because it provides a “trusted” and decentralized infrastructure. Nebula is utilizing the Exonum protocol, which has an automated consensus structure and faster processing than, say, the popular Ethereum. An individual or institution’s data can actually reside anywhere, he said, since it’s encrypted and the Nebula marketplace governs who can buy access and under what circumstances, as agreed upon by the owner.
The enterprise service will allow institutions to offer their large data sets of health, clinical or genomic data, which he said will similarly be bound by use case-specific consent from the data owners.
This Nebula marketplace is only the latest effort to monetize health and medical data. Earlier this month, for instance, ad exchange PulsePoint unveiled a healthcare ad market targeted at patients and doctors.
And Estonia-based Lightstreams has launched a blockchain-based network with a new Permissioned Block protocol that it says could allow a user to securely control her own medical data. Both the Lightstreams and the Nebula efforts see decentralized storage as a security advantage, because there is no single point of failure, rather than as a weakness because there are so many targets in so many different situations.
Among direct competitors. Obbad pointed to LunaDNA, which he said was more oriented toward building a “biobank,” while Nebula is “building tools that others can use.” Genome sequencing service 23andMe, he added, is similarly building a biobank, but Nebula is looking to acquire “richer data sets” that include diverse data types.