Blockchain could end the looting of indigenous people’s genetic data

You wouldn’t know Keolu Fox was a genomic scientist at the University of California, San Diego just by looking at him. His long hair, beard and laid-back personality seem more appropriate for a Los Angeles beach or a smoke circle at a party than a stuffy lab – and in fact, he’ll tell you there’s nothing he loves more than surfing or smoking a joint now and then then. But once you get the native Hawaiian up to speed on the intricacies of indigenous genomics or the extractive practices of big corporations and colonial governments, you’ll quickly find out what he’s really about.

“This is about values ​​at the end of the day,” Fox told The Daily Beast. “We don’t fit into the status quo because we see it as extractive. Our lives have been directly affected by colonialism, and we see it everywhere in science. So it is impossible for us not to disrupt.”

The disruption he is referring to is a proposal to indigenous peoples to take back control of a fundamental part of them: their DNA – or more specifically, their genomic data. For decades, researchers have been able to freely access genomic information from underrepresented indigenous peoples around the world due to major DNA mapping initiatives such as the Human Genome Diversity Project.

Although the goals of these projects are ostensibly good – the collection and preservation of biological data from people all over the world – they have also resulted in an unfair and exploitative use of that data. This is especially the case when it comes to underserved communities and populations.

“Many ongoing genetic studies use biomarkers from indigenous groups, but these indigenous groups’ own existence is not recognized by their colonial governments,” Krystal Tsosie, a geneticist and bioethicist at Vanderbilt, told The Daily Beast. “Yet there’s this quick search — and this phrase has been used in publications in the past to describe the Human Genome Diversity Project — to try these populations before the indigenous population disappears. Like there’s an urgency to try us like we’re practically gold.”

Fox compares genomic data to oil. Where companies once made billions from fossil fuel extraction, a new industry of data aggregation has arisen – proving incredibly lucrative for unscrupulous for-profit companies looking to collect and sell data about people.

These communities, Tsosie explained, rarely benefit from obtaining DNA samples, despite lofty promises that their genetic information will lead to the development of medical treatments that will directly help them. Instead, the data is used by companies like AncestryDNA and 23andMe to supplement their ancestry database, or researchers will use it in their own research and articles that do not help or serve these populations at all.

“Researchers and for-profit companies use indigenous biomarkers from exploited groups commercially. But in the meantime, the indigenous people who provided the data are still dying, Tsosie said. “They are still waiting for the drugs and therapies to arrive, even though they were promised it.”

So to confront these unfair practices, Tsosie and Fox suggest using blockchain in a commentary published Thursday in the journal Cell. While you might associate blockchain with cryptocurrencies or NFTs, the technology could actually give indigenous peoples control over how their DNA is used. With blockchain, they could limit access to genomic data so that only certain researchers can use it at their discretion.

The commentary hearkens back to the original promise of the technology before it was co-opted by cryptocurrency and NFT influencers. Used as a distributed ledger, it can transparently store and protect data. In the case of Indigenous genomics, the goal is to “keep track of and help facilitate access” to the records and allow data to be shared in a coordinated, well-recorded manner, according to the paper. When someone wants to use or access the data, this information is recorded on the blockchain. That way, there is always an overview of who used it, and for what purpose.

“Everyone associates blockchain with cryptocurrencies and NFTs, which is sad and shameful because it kind of dismisses what the actual true potential and utility of a blockchain system is,” said Fox, the senior author of the commentary. “Blockchain is an opportunity to decentralize control.”

Blockchain is like a digital ledger or database. It works by collecting data in groups called “blocks”. When a block is filled with data, it is added to a chain called the blockchain. Each block contains a timestamp and information about transactions, including who has access to it. Since it is distributed via a computer network, it is also decentralized. It can also be encrypted with a unique key that allows specific people to access it. So while it is often used to transfer cryptocurrencies from one user to another, it also holds a lot of promise for storing different types of data such as indigenous genomics in a secure and transparent manner.

According to the paper, metadata such as gender, age, group, DNA or RNA sequence data, and whole genome sequence data will be stored on the blockchain. If a researcher or company wants to access the data, they will make a request via a smart contract, which registers the requester in the chain. The request can then be approved or rejected. If approved, the user will be able to access the data. (Note that this is just a hyper-simplified explanation; the process itself is very complicated and will require much more development and refinement to work effectively.)

The authors also note that the blockchain model is still very much in its early stages, and they still need to consult with indigenous leaders and communities to ensure it best serves these populations. But if and when it is implemented, they believe it has the potential to uplift these communities in an exponential and explosive way that goes beyond health and genomics.

By giving the data back to indigenous communities, it also has the potential to create jobs and educational opportunities in STEM, according to Tsosie who is also a co-author of the paper. She said it could allow them to train “computer science for communities”.

“We want people to transform their health. I think blockchain and this whole new ecosystem of innovation is going to help,” Fox said. “People want to innovate. They want to create new things.”

Ultimately, this is deeply personal for researchers like Fox and Tsosie. It is not an abstraction for them. It’s about their families. It’s about their friends. It is about the very essence of what makes a person a person: DNA. If you want to have a say in your future and your livelihood, you need to wrest control of the basic building block of what makes you who you are, and not let it be exploited for a company that sees your DNA as a dollar sign .

So while blockchain is more associated with crypto trends, it holds the promise of gaining control over not only indigenous genomic data, but the very future of those communities as well – and that’s worth a lot more than any NFT or cryptocurrency.

“You’re always going to be the winner if you decide what the metric is,” Fox said, quoting hip-hop artist Talib Kweli. “Control the game. Don’t be the game or the predator.”