Blockchain for Sharing Genomic Information

From Andrew Han blog:

"... Recent reports on blockchain in genomics, from popular news outlets such as "Wired," have focused on the coins that offer individuals a chance to participate in — and reap rewards from — the exchange of genomic information. Most of the firms that spoke to GenomeWeb for this article offer, or will offer, a blockchain-based token, but they said that blockchain offers significant advantages to the buyers as well as sellers.

Dennis Grishin (Nebula Genomics co-founder) said Nebula could help solve the headache of acquiring genomic data. "Right now, you have to manually contact different data banks with emails or phone calls, asking what kind of data they have, signing forms, dealing with consent issues, transferring payments. Only in the end do you get the data you're looking for and you have to do this multiple times. And after you obtain the data, you need to curate it before you can analyze it."

David Koepsell, a bioethicist and author who co-founded Encrypgen with his wife, Vanessa Gonzalez Covarrubias, a pharmacogenomics researcher at Mexico’s National Genomic Medicine Institute (INMEGEN,) said they are building "a whole ecosystem dealing with genomic data. We'll be creating a whole new pool of data for buyers. We'll be aggregating metadata, too. We want to make sure we can help to mine the data for interesting variants."

He added that Encrypgen is working with researchers to develop "bioinformatics stuff behind the scenes that will be helpful to anyone doing studies to make sure this is a unique and helpful product."

And security features inherent to the blockchain may give researchers, as well as individual participants, peace of mind.

"This is the first reasonable scientific method I've heard of that can safely and effectively protect the privacy and confidentiality of people's genomes," said Peter Elkin, chair of biomedical informatics at the University at Buffalo. He has been scoping out several of the new blockchain-based genomic data-sharing platforms that have launched in the last few years, including Encrypgen.

"That has always been the real worry of scientists, that mostly went unstated — that once we start adding genomic data to clinical data, we no longer have the ability to de-identify that data. Blockchain gives us increased confidence that we can protect that privacy of participants and that makes it practically easier to do clinical genomic research."

"It's pretty cool," he said. "The downside is these are computationally intensive systems." 

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"... Bina Ramamurthy, a professor of computer science at Buffalo, who has worked with Elkin on the potential of blockchain in bioinformatics, described the blockchain as an unchangeable, decentralized record of transactions. This enables the exchange of information, absent a central authority. For Bitcoin, this information was simply the amount of the coin exchanged between two parties. "But the payload doesn't have to be digital currency," she said. "It can be genetic data."

Because the transactions can be seen by anyone in the network, it provides transparency. "It records what I transacted with you," Ramamurthy said. "What happened to that genomic item? The blockchain has provenance of this and proof that I sent this genomic data to you."

But the blockchain isn't a place to store the genomic data itself, she said. Rather, what the blockchain might record is a key to unlocking that information on another, secured, storage platform.

That key is controlled by the data owner, who gets to decide which parties can access it. And on the blockchain, whoever grants access to data can be compensated for that access. ... "