Personal Genomics to Blockchain Technology
The Harvard Crimson, Amy L. Jia and Sanjana L. Narayanan | Mar. 4. 2018
Researchers at Harvard have developed a new company that aims to give individuals full ownership over their personal genomic data through the use of blockchain technology, which allows for secure storage and easy sharing of encrypted information.
Harvard Medical School Genetics Professor George M. Church, Ph.D. student Dennis Grishin, and former Google Project Manager Kamal Obbad ’16 founded Nebula Genomics. The company hopes to address challenges facing the field of personal genomics, a discipline that maps individuals’ genetic blueprints.
The co-founders say the company’s name reflects the basic premise of blockchain technology, which Obbad described as a “decentralized, trustless database” that “essentially everyone owns.” The information added to the database must be approved by all members.
“‘Nebula,’ as you know, is Latin for ‘fog,’ which is kind of the idea behind blockchain,” Grishin said. “It’s very decentralized, and there’s no central point that controls everything—just a network of independent participants that just interact with each other. And that’s what Nebula is.”
After conducting several consumer surveys and speaking to pharmaceutical and biotechnology companies, the team found a disconnect between data owners and data buyers they say inhibits the exchange of useful genomic data.
“Right now, there are middlemen that exist between actual data owners, like you and me, and the pharma and biotech companies that would like to get access to that data. Those middlemen are pretty much all of the personal genomics companies that exist right now, like 23andMe, Ancestry, and others,” Grishin said. “In the end, their objective is to keep your data and sell your data to those pharma companies. And that’s actually what they’re making their profit with.”
Grishin said the presence of these middlemen introduces several problems. On the one hand, individuals lose ownership and control over their personal data and do not profit when that data is sold to buyers, sometimes for hundreds of dollars per individual.
On the other, pharmaceutical and biotechnology companies must go through slow data acquisition processes and are limited in what they can do with the static information they receive, as they cannot ask the data owner additional questions.
Nebula Genomics thus seeks to connect data owners directly with data buyers. Grishin explained that individuals can use the Nebula app to grant a pharmaceutical and biotechnology company of their choice access to their data for research purposes. Nebula will also give individuals more insight into what their genomic data means throughout their lifetimes, expanding the frontiers of genetics research and scientific advancement.
Grishin emphasized user privacy will not be compromised in the process.
“One important aspect in regards to data sharing is that you never actually sell your data, meaning you never really lose ownership of your data, but rather you’re just lending it to those buyers,” Grishin said. “We’re using certain encryption technologies that enable data buyers to just temporarily get access, compute on the data, get some results, but actually never see the input data. After the computation is done, they lose access.”
Another problem with current personal genomics companies is that they only offer genotyping of “a fraction of a percent of the whole genome,” according to Obbad.
“They look at these [alleles] because they already know what they do, so this data is not super valuable to researchers. But what could be really useful to researchers is full genome sequencing or exome sequencing,” he added.
Obbad said Nebula Genomics hopes to address this concern as well.
The team hopes to launch Nebula within the next few months in partnership with a pharmaceutical company that could benefit from their services. In the long term, they plan to grow their database and work closely with third-party apps to discover new uses for genomic data.
“I think for me and Kamal, and certainly for George, our vision is to create something that will fundamentally transform health care and science,” Grishin said. “And blockchain is a tool that we think is very suitable for addressing this challenge.”