The DURI (GA4GH::DURI) Work Stream is one of the elements of the Global Alliance for Genomics and Health (GA4GH), aimed at developing standard formats for the exchange of genomic data for research and biomedical applications.
There are restrictions on the use of human genomics data that are derived from ethical requirements including participants’ research consent. For example: “Data can only be used for breast cancer research with non-commercial purpose”. The current process to request access to data to ensure studies are consistent with these restrictions is inefficient and slows down science.
We envision a world where biomedical researchers will be able to efficiently discover genomics and health data, and then apply and get access automatically based on their digital identity and, if required, a machine readable research purpose.
To achieve this, researchers need to have a reliable global electronic identity that is recognised for data access. In collaboration with the data authorities who are responsible for proper data use, this researcher identity would be authorised to access restricted data. We envision this type of access could be allowed for this use across a federated network of data repositories for researchers who have a trust attribute on their identities. For example: researchers would be able to query a network of repositories across country borders and find the genomes and phenotypes of all females of the age of 20-40 that have a BRCA mutation and can be used to study cancer; once they found that data they would be able to apply to access the data in an easy fashion and could often also instantly get access to research the data based on a digital assessment of appropriate claims, trust credentials and agreed policy. Read more here…
The DURI is split into 2 subgroups