Once reserved only for the clinical setting, social and genetic health data is now common outside of the medical community. Add to that the increasingly digital world we live in, and the challenges of data privacy and representation abound.
While existing tools facilitate the sharing of genomic information with researchers, some in the community have raised concerns about database misuse. For example, researchers at the University of Freiburg published a paper last year detailing how Europe’s Roma people are vulnerable to poor practice in genetics. The main issues, as identified by lead author Veronika Lipphardt and her team, center on poor ethical standards, unclear consent processes and a stigmatizing portrayal of the group.
In an article published Thursday in Cell, researchers from the University of California San Diego, expressed similar concerns about Indigenous nations as marginalized communities.
“Genomic data from Indigenous peoples, in particular, have been the target of researchers interested in advancing our understanding of various human diseases and genetic disorders and conditions, often used without free, prior, and informed consent,” the scientists write.
To that end, the have proposed a three-tier blockchain model where researchers are only allowed to access genomic data after Indigenous entities have approved the research project.
The team based its new model, called Indigenous Data Sovereignty, off the Native BioData Consortium (NBDC), a first-of-its-kind non-profit Indigenous-led biobank and research institute that ensures advances in genetics research provide benefit to Indigenous nations and hosts skills training workshops for aspiring Indigenous scientists. The NBDC is led by Indigenous scientists and community members operating within the jurisdiction of tribal lands, and it has its own infrastructural capacity.
“Recognizing community buy-in of these initiatives, new technologies, such as blockchain, should not seek to reinvent governance structures and existing community partnerships, but instead, enhance them by enabling self-governance of data systems,” say the researchers.
That’s why their Indigenous Data Sovereignty blockchain framework begins by mapping its features to structures already established by the NBDC.
Framework principle 1
According to the article, the blockchain should incorporate individual- and community-level data ownership and access privileges. The researchers propose a “consortium”-based approach, where participation in the blockchain involves multiple pre-vetted tribes and organizations with different authorities and levels of permission, but which inherently represents a decentralized network of participants that all agree to the shared governance principles of the network.
Framework principle 2
Second, the set of rules, roles, and responsibilities that govern the consortium blockchain will be designed and specifically adhere to the core principles of Indigenous Data Sovereignty that establish Indigenous peoples’ right to govern the collection, ownership, privacy and application of their own data.
“This is distinctly different than other data management systems that are not indigenous-specific as Indigenous Data Sovereignty will be purposefully coded into the design of the blockchain’s governance environment, including through the execution language of smart contracts used for data access and sharing,” explain the authors.
Framework principle 3
The researchers propose consensus mechanisms to achieve agreement and validate transactions among the distributed nodes. While there are multiple mechanisms, their approach focuses on two: proof of authority (POA) and proof of stake (POS). With a POA approach, at least 51% of the authorized representatives/members of an Indigenous nation would need to accept a data request for access; otherwise, it would be denied. Alternatively, a POS consensus can be used in which the stakeholders holding the largest volume of data have a “larger” say in the approval or denial of a data request.
Data privacy on blockchain
Importantly, no individually identifiable information will be written on the blockchain. Instead, de-identified metadata will be stored on-chain and used to map off-chain data sources. Once a third-party user is approved/authorized to access data, they will do so from the off-chain data source. Additionally, individual genomic data will always reside external to the blockchain on the off-chain source, such as the tribal biobank servers like the NBDC biobank.