How much is your genome worth? George Church, a pioneer in the field of genetic sequencing, is encouraging the public to consider the value of their genetic code by making it possible to rent out your genomic data to researchers and pharmaceutical companies.
Nebula Genomics, the latest start-up company co-founded by Church, hopes to accelerate advancements in the field of genomics by creating a secure marketplace for the exchange of personal genetic information. To address current concerns regarding control, privacy, and transparency of personal genetic data, a blockchain infrastructure will be utilized, built in collaboration with Longenesis, which is a partnership be-tween leaders in the field of blockchain (Bitfury) and artificial intelligence for health care (Insilico Medicine). Blockchain technology was originally invented to serve as a “public ledger” for overseeing cryptocurrency transactions. Nebula will use a similar structure to manage genetic information trans-actions, while also creating a system to incentivize the public to participate by providing compensation for “renting out” your genome via Nebula tokens, a form of cryptocurrency.
With blockchain, users of Nebula will have full control over how their genome can be accessed by third parties. Blockchain infrastructure allows for a decentralized record of transactions, which means there is no central point of vulnerability because the blocks of transaction records are stored across many computers. Furthermore, the blocks are self-auditing and immutable once they are linked onto the chain through cryptography, which ensures transparency regarding how the data are being handled.
In addition to the enhanced control and security features of blockchain, Nebula further distinguishes itself from major genetic testing competitors by providing whole genome sequencing. In partnership with Veritas Genetics, another company co-founded by Church, Nebula will provide whole genome sequencing and phenotypic interpretation services at the current price of $999 USD. This is in contrast to major competitors like 23andMe and Ancestry that offer DNA microarray-based genotyping which provides more limited information.
Both individuals and industry can profit from having personal genomes sequenced. As an individual, one may be able to make more informed choices regarding medical treatments and prescriptions based on personal genetic variants, or seek out preventive screening or treatments if high risk mutations are identified early on. Industries and researchers will also benefit from access to an extensive database of whole genomic data. Both users and buyers will interact with genetic data using an existing open-source platform known as Arvados, which is already used in the labs of many research groups for storage, sharing, and analysis of large genomic datasets. Researchers can also survey Nebula users to identify potential study participants, which may aid recruitment for studies involving rare diseases or genetic variants. By matching users with their potential data buyers based on study criteria, the upfront cost of sequencing for users could also be subsidized by buyers to further incentivize public participation.
By addressing current challenges and public concerns regarding the handling of genomic data, as well as creating a convenient repository for research and industries, Nebula Genomics hopes to accelerate growth and research into genomic data-sets, personalized medicine, and drug development. However, questions remain about how genomic data can be effectively integrated into healthcare systems, such as whether physicians or pharmacists should be responsible for interpreting genomic profiles and ensuring medications are appropriately prescribed. Concerns regarding the use of blockchain are also warranted, since past events have revealed points of vulnerability can occur in the system that have led to cryptocurrencies being hacked and stolen. It will be essential for Nebula to elaborate on the security measures that will be taken to protect user privacy as the age of genetics continues to advance society into new ethical and legal territory, particularly since the realization of this genetic marketplace will not be far-off. As of now, Nebula has raised over 4.3 million in seed financing from leading venture capital firms and aims to have the service operating as soon as 2019, with a beta version launching as early as the end of 2018.