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Data sovereignty in action 

Bioinformatics provides the tools and strategies needed to analyse information and is critical to genomics research. One of the most important projects Genomics Aotearoa has undertaken is the Aotearoa Genomic Data Repository (AGDR) - a unique online resource. 

This repository has been jointly developed by Genomics Aotearoa and the New Zealand eScience Infrastructure (NeSI) to provide a secure place for the Aotearoa research community to store and to share genomic data within a Māori values context, following the principles of Māori Data Sovereignty.  

What we have done


Considerable consultation and work went into developing the AGDR repository, both from a technical perspective and to implement Māori Data Sovereignty principles to meet Te Tiriti o Waitangi obligations. This is the first time a comprehensive and Aotearoa-wide set of protocols using CARE principles has been applied to taonga data. 

 “We wanted to deploy a system that allows both researchers and kaitiaki to fulfil their responsibilities relating to genomic data sets. We have done extensive work that provides a strong foundation - we now have a robust facility with systems to move data in and out rapidly using latest technology, using FAIR2 and CARE principles, have the Te Mata Ira and Te Nohonga Kaitiaki guidelines as an ethical framework for kaitiaki-centric data access and submission protocols based on principles of Māori data sovereignty,” Project co-lead Mik Black said. 

Approval protocols have now been put to the test. There have been nine applications for access to taonga data over the last year. Three of these applications were approved by kaitiaki, two were declined, and four require more information before a decision is made. The two declined applications were both missing basic information about the projects.

Enabling kaitiaki to make informed decisions on the use of data and rejecting applications is an example of true data sovereignty. 

The benefits

Aotearoa has started the process of keeping taonga genomic data safe from exploitation by housing data in a locally based platform and involving kaitiaki in decisions about data access. Although the AGDR cannot rectify historical misuse of data, the AGDR data sovereignty process has now been tested and found robust. The way is paved for kaitiaki to have the final say on of the use of taonga data for the long-term benefit of Aotearoa.

Read more about Bioinformatics capability here