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Nebula Genomics, a startup spun out of a Harvard Medical School laboratory in 2018, has signed an agreement today with EMD Serono (the biopharmaceutical business of Merck KGaA, Darmstadt, Germany in the U.S. and Canada) to allow access of genomic data from Nebula’s blockchain-based network.
According to a recent Nebula blog post, the goal of this pilot project is to help EMD Serono enhance research efforts by supporting its scientists as they develop potential new medicines. Access to Nebula’s database of anonymized genomic data will help researchers better understand the causes of diseases.
EMD Serono, the biopharmaceutical business of Merck KGaA, Darmstadt, Germany, has entered into a pilot collaboration with Nebula Genomics. This early stage pilot collaboration with Nebula Genomics is another example of how we are collaborating with external partners to generate big data for comprehensive molecular characterization of patients. Such data are the basis for a deeper understanding of diseases that will lead to precision medicine, tailored to the needs of patients,” a company spokesperson said in a statement.
While genomics has the potential to transform healthcare, researchers are hindered by the overall lack of data, as well as difficulty accessing information due to fragmentation and inefficient consent management.
In order to tackle these challenges, Nebula has created a blockchain-based network that connects patients and consumers with researchers, incentivizing data sharing by ensuring equitable compensation, transparency and security.
We provide low-coverage whole-genome sequencing to hundreds of people free of charge. In order to offer free sequencing to a larger audience, we have established collaborations with pharma and biotech companies that will sponsor sequencing in exchange for access to genomic data. Our collaboration with EMD Serono is the first validation of our model for sponsored sequencing,” Dennis Grishin, Chief Scientific Officer of Nebula Genomics, told me.
This partnership will ultimately enable EMD Serono to access “on-demand” patient data directly from the source.
This first pilot is in collaboration with Nebula’s lung cancer study. We are offering lung cancer patients free genome sequencing, providing them with full access to their genomic data so that it can potentially be used to make better treatment choices. In return, these individuals will allow EMD Serono access to that data for research purposes. Both patients and pharma companies benefit from this,” Grishin explained.
Using Bitfury’s Exonum enterprise blockchain platform, which taps into the bitcoin blockchain, Nebula provides a tamper proof device for record keeping.
We use blockchain technology specifically to record consent from study participants. We don’t store data itself on the blockchain, but rather the permissions. For example, we store requests to access data, which comes from researchers. We also store user permissions. We timestamp all of this and record it on the blockchain, yet the genomic data is encrypted and stored offchain,” said Grishin.
Moreover, Girshin notes that blockchain technology is useful in terms of creating transparency. For instance, consent when accessing data sets has been a pain point for many large pharma companies. However, since permissions are recorded on the blockchain, researchers always know that they can access that data, as it’s transparent and immutable across the network.
Interestingly enough, sponsored genomic sequencing is becoming somewhat of a trend in the pharma world. For example, an ongoing sequencing of 500,000 samples collected by the UK Biobank is being sponsored by a consortium of pharma and biotech companies including Regeneron, AbbVie, Alnylam, AstraZeneca, Biogen, and Pfizer.
Yet according to Girshin, many of these projects are government supported. Nebula aims to further extend this model by using blockchain technology to ensure that patients are always in control of their data. As stated in Nebula’s blog post,
The success of research depends on successful recruitment and sustained engagement of patients. We believe that this requires a platform that puts the patient at the center by empowering and incentivizing them to become more actively engaged. To this end, we give our users tools to explore their genomic data, we use blockchain to let them control who can access it, and we ensure that they are compensated fairly for contributing to research. We hope that by doing so we can elevate the users of our platform from patients to partners, which will drive participation and benefit biomedical research.”
However, it’s important to note that blockchain technology is just one element powering Nebula’s database of anonymized genomic data. The company also uses multiparty access control to encrypt data with multiple keys, which are then distributed among multiple nodes. This data can only be collected and made accessible when proper permissions are made on blockchain. Nebula is also developing a technology to compute data in order to extract insights without decrypting the information.
“We are currently working on a system that enables querying of data without ever decrypting it,” said Girshin.
Overall, the application of blockchain combined with various other technologies has resulted in a new business model in personal genomics that aims to benefit both individuals and researchers such as those at EMD Serono.
“We want to help patients benefit from their data and also empower them to actively contribute to research. Our goal is to spearhead a more patient-centric approach to medical research where pharmaceutical companies and patients are working together to accelerate drug development,” said Grishin.