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Blockchain Approach Could Offer Indigenous Groups Way to Control Access to Genomic Data


NEW YORK — A blockchain-based framework could be used to oversee access to genomic data from Indigenous groups and allow community input into how the information is used, a team from the University of California, San Diego, has proposed.

Genomic data from Indigenous and other marginalized groups has long been studied without proper consent and has often not led to benefits for those populations. In a commentary published in Cell this week, UCSD's Keolu Fox and his colleagues have proposed that a blockchain approach — which is often associated with cryptocurrencies like Bitcoin — could be applied to enable Indigenous communities to provide input on or authorization for access to their data, as well as to help any resulting benefits to flow back to the community.

"We are creating [technologies] so that people are in control of their data," said Fox, who is also part of the Native BioData Consortium and the Indigenous Futures Institute. "It's very important for me as a Hawaiian person that historically marginalized communities are in control of their data and their resources. Because what is one of the kind of founding components of settler colonialism? It's stealing and extracting resources from people and building influence and power from those resources. We are directly combatting that with these ideas."

The framework Fox and his colleagues described draws on the concept of Indigenous Data Sovereignty, which is the right of an Indigenous nation to oversee the collection, ownership, and application of its own data. This, he and his colleagues noted, also calls for the inclusion of Indigenous people in the development and oversight of systems managing their data, so their values, concerns, and interests can be incorporated.

In their commentary, Fox and his colleagues suggested that tools like the blockchain could be used to enable Indigenous communities to oversee the use of their genomic data.

Blockchain systems are often described as a distributed ledger system. They securely record transactions using cryptography so they are recorded as blocks over time in a chain that cannot be changed, which can help with establishing data provenance and transparency. It also works over distributed systems.

Previously, companies like Nebula Genomics have tried to establish marketplaces for genomic data where individuals could grant access to their information via a blockchain platform. Others have envisioned uses for the blockchain in personalized medicine to enable secure data exchange.

Fox said one aim of his team's approach is to create transparency and accountability. As an example, he pointed to ancient DNA studies. Ancient Indigenous samples found in museum or university collections have often been acquired through unsavory means, and every time a researcher collects DNA from an ancient sample, part of it is destroyed. Knowing who analyzed that sample and why, and where that research was done – information that could be stored on the blockchain – could shine a light on that sample's provenance and provisioning.

The decentralized nature of blockchains would also enable people to emphasize what it is they value and what knowledge they want to glean from their genomic data. Currently, Fox noted that most studies are top-down, driven with outside researchers coming and determining what information should be gleaned. The type of approach Fox envisions is more bottom-up. "We're trying to take advantage of this new ecosystem for innovation by situating people in control of their genomes and asking them what they want," he said. This, he noted, is being done with the Native BioData Consortium.

"The beauty of this more grassroots, decentralized future is that the unintended consequences and actually codesigning and iterating and codeveloping ideas is going to lead us in new directions for innovation that we can't even predict yet," Fox added.

In their commentary, Fox and his colleagues focused on two approaches to implementing consensus mechanisms within an Indigenous Data Sovereignty-oriented blockchain for data: proof of authority and proof of stake. In a proof-of-authority approach, a simple majority of authorized representatives of an Indigenous nation would be needed to allow a data access request. Meanwhile, in a proof-of-stake approach, stakeholders holding the largest volume of data would have a greater say in responding to the request. Either approach could allow for community management of Indigenous data in a way that preserves privacy, they added.

A blockchain approach could further lead to benefit sharing. If a researcher uncovers a genetic mutation that leads to the development of a new drug, Fox said, royalties or other benefits from that could then flow back to the community or individuals in whom the mutation was found.

But there are challenges to getting there.

"This commentary proposes an important set of next steps for exploring whether blockchain technology can meet the needs of Indigenous communities interested in exercising sovereignty over their genomic data," Paul Spicer, a professor of anthropology and principal investigator of the Center on the Ethics of Indigenous Genomic Research at the University of Oklahoma, said in an email.

Spicer further noted, as Fox and his colleagues did in their commentary, that Indigenous communities in the US may lack the needed infrastructure for this approach, an issue that would have to be addressed. Further, blockchain approaches have environmental impacts that would also need to be considered. Even with those concerns, Spicer said that "there may nevertheless be potential here."

"Much of that [potential] hinges on the development of procedures for community, rather than individual, control of data," he added. "The proposals in the current paper for these processes raise many questions that need to be carefully considered by Indigenous communities as this work progresses."