Story at a glance
- Genetic data has been important for making medical breakthroughs.
- Human genomic data usage has privacy and ownership issues.
- Genome researchers suggest that blockchain technology can help Indigenous nations exert control over how their genomic data is used.
Advances in medicine and health research often depend on genetic data. The human genome, ever since researchers began sequencing it, has been key to unlocking aspects of our biology. Although most of our DNA is the same, there are some variations among populations that scientists find useful examining. To that end, access to genomic data from diverse populations may help to advance knowledge and treatments, but the research field still needs to address privacy and ownership issues, especially for marginalized communities. In a paper published in Cell, researchers lay out a potential model for using blockchain technology and propose an Indigenous genomics data framework.
Blockchain technologies are a form of “ledger” technology, explain the authors, most well known for making cryptocurrencies possible. The authors propose developing blockchain-based Indigenous data sovereignty (IDS) for genomic data. They define IDS as “the right of an Indigenous nation to govern the collection, ownership, and application of data generated by its members.”
The main reason for proposing IDS for genomic data is to ensure that Indigenous peoples’ data are used with their knowledge and consent and so that Indigenous nations can dictate what they are willing to participate in. “[Existing solutions] may indirectly enable the continued exploitation of Indigenous Peoples’ data in violation of Indigenous Nations’ rules and regulations,” the researchers wrote. “Innovations in digital health now focus on putting the patient and their values at the center of a collaborative design approach.”
The authors propose forming a consortium of stakeholders that can vote on data requests and oversee data storage, processing, and management. “The rationale for why an IDS genomics blockchain needs to be co-created and governed by Indigenous nations is motivated by the recognition of these diverse groups as self-governing entities able to regulate their health and political affairs,” write the authors. “[This model will] ensure each Indigenous Nation can control access to their members’ sensitive health information and prioritize research that is linked to community priorities.”
This model is still in the early stages of development, the authors note. One of the next steps for the team is to speak to more Indigenous leaders and communities to further refine the framework. But there is great potential to utilize blockchain technology to achieve the goals they’ve outlined in the paper. With this paper, they are taking the first steps towards taking back control of genomic data.
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