Blockchain technology could help indigenous people gain control of genomic data – The Hill
The story at a glance
- Genetic data have been important in making medical breakthroughs.
- Human genomic data use has privacy and ownership issues.
- Genome researchers suggest that blockchain technology could help indigenous peoples exercise control over how their genomic data is used.
Advances in medicine and health research often depend on genetic data. The human genome, ever since scientists began sequencing it, has been the key to unlocking aspects of our biology. Although most of our DNA is the same, there are some variations among populations that researchers find useful to examine. To that end, access to genomic data from different populations can help advance knowledge and treatments, but the research field must still address privacy and ownership issues, especially for marginalized communities. In a paper published in Cell, researchers lay out a potential model for the use of blockchain technology and propose a data framework for indigenous genomics.
Blockchain technologies are a form of “ledger” technology, the authors explain, best known for making cryptocurrency 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 use 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 people’s data in violation of indigenous people’s 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 suggest forming a consortium of stakeholders that can vote on data requests and oversee data storage, processing and administration. “The rationale for why an IDS genomics blockchain must be co-created and governed by indigenous nations is motivated by the recognition of these diverse groups as self-governing entities capable of regulating their health and political affairs,” the authors write. “[This model will] ensure that each indigenous nation can control access to its 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 with more indigenous leaders and communities to further refine the framework. But there is great potential for using blockchain technology to achieve the goals they have outlined in the paper. With this paper, they are taking the first steps towards taking back control of genomic data.
Published on July 21, 2022
