Moemoea nui Aotearoa: Challenges and Strategies in Data Lifecycle Management in New Zealand

New Zealand eScience Infrastructure
Moemoea nui Aotearoa:
Challenges and Strategies in Data Lifecycle Management in New
Zealand
Claire Rye, Product Manager Data Services, New Zealand eScience Infrastructure

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Matariki in the night sky.
Photo courtesy of Fraser Gunn
www.astroimage.co.nz
Matariki

Matariki touches us all
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The stolen stars of Matariki
Published 2018, Scholastic New Zealand

Matariki touches us all
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Matariki in the night sky.
Photo courtesy Mark Russell
https://www.stuff.co.nz/travel/experiences/maori-culture/300361917/my-first-matariki-celebrating-mori-new-year-at-the-bay-of-islands-new-festival?rm=a
“I see this day as a chance to move the understanding of
mātauranga Māori beyond the idea that it’s mainly stories
about deities.
Our knowledge systems are still so often seen as “myths and
legends”, as if they’re devoid of proper science. But there is
empirical science that sits at the heart of mātauranga Māori.”
Professor Rangi Matamua
Quote from: How Matariki will connect us all
https://e-tangata.co.nz/comment-and-analysis/how-matariki-will-connect-us-all/

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https://www.mbie.govt.nz/science-and-technology/science-and-innovation/research-and-data/te-ara-paerangi-future-pathways/

799 TB 72 million 5,597
Amount of data transferred Number of files transferred Number of transfers made
Globus benefits:
High-speed data transfer
● Move gigabits of data on a network 1,000 times faster than broadband
Internet. Powered by REANNZ (NZ’s national advanced network provider),
research data transfers can be done at 10Gbps.
Secure and easy data sharing
● Share your research data with collaborators locally, nationally, and around
the world. Control who has access using group management tools.
Research data delivery network
● Take advantage of our partnering institutions across NZ who have existing
data delivery network nodes. Transfer to and from any laptop or server
using a Globus connect endpoint.
National data transfer platform activities in 2021:
Live
Coming soon
Testing

Our big numbers are small
CERN’s computer centre (Image: Maximilien Brice;
Claudia Marcelloni/CERN)
Globus global figures

Aotearoa Genomic Data Repository
Data Repository for Taonga Species
Co-designing genomics projects with Māori and
ensuring Māori data sovereignty.

What does co-design mean?
Co-design is the act of creating with stakeholders, users, the community,
specifically within the design development process to ensure the results meet
their needs and are usable.
Genuine desire to take on board and incorporate the ideas and perspectives of
the stakeholders, users and community.
Why is it important?
● It’s the right thing to do
● Te Tiriti obligations
● Ensure culturally appropriate genomics studies
● Deliver benefits to Māori from genomics
● New ideas and perspectives bring innovation
● History of exploitation rather than collaboration

No repository for NZ genomic data of any kind.
● Researchers would host their own data or
would put it in overseas repositories e.g.
ENA, GenBank
○ No way to know what/where all the “NZ
genomic data” was
○ No metadata standard
○ Neither result allowed for any kind of
governance of the data
The situation:
Aotearoa
Genomic Data
Repository

What did co-design look like for us?
● Workshops
○ Indigenous governance, ethical frameworks
○ Metadata
○ End usability
● Weekly review with the working group
● Case studies
○ Learning about metadata requirements on different types of research
https://www.waikato.ac.nz/__data/assets/pdf_file/0018/321534/Te-Mata-Ira-Genome-Research-Guidelines.
https://www.gida-global.org/care

Māori data sovereignty
Māori Data Sovereignty refers to the inherent rights and interests Māori,
whānau, hapū, iwi and Māori organisations have in relation to the creation,
collection, access, analysis, interpretation, management, dissemination, re-use,
and control of data relating to Māori, whānau, hapū, iwi and Māori organisations
as guaranteed in Article II of Te Tiriti/Treaty of Waitangi (Taiuru, K. 2020).
Taiuru, Karaitiana (2020. Māori Data Ethical Framework https://www.taiuru.maori.nz/tiritiethicalguide/Māori-data-ethical-framework/

Whakapapa
Whakapapa is a key reference point for Māori when
talking about health and genetics. Whakapapa was
described as the connection between people and as
creating a responsibility for both future and past
generations. Whakapapa is often used as a framework
to describe genealogy, social and ecological
relationships, cultural histories, family traits and
ancestral inheritances. At a physical and spiritual level,
whakapapa is embodied within the DNA of a person;
therefore, the storage and use of human tissue for
research becomes a culturally significant activity.
Te Mata Ira—Faces of the
Gene
Developing a cultural
foundation for biobanking
and genomic research
involving Māori
M. Hudson et al.

○ AGDR
https://data.agdr.org.nz/
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Kaitiakitanga
Kaitiakitanga is a form of guardianship with
responsibility to look after specific resources. In the
context of genomic research it relates to the use of
samples, DNA and data (genome data, clinical data, and
information about whakapapa). It is important to clarify
who holds the role of kaitiaki within the research team
and the community, and that they are aware of the
responsibilities of that position to maintain ‘te hau o te
taonga’.

Sharing genomic data via Globus
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Aotearoa Genomic Data Repository
● More submissions
● Improvements based on feedback
● Finding Kaitaki for projects
without Māori engagement
Rakeiora Project
The Rakeiora Project a programme to improve genomic knowledge
that will impact on the wellbeing of New Zealanders is being
co-developed and co-governed with Māori. It is a “pathﬁnder” to
test options to acquire, protect, use and store genomic datasets for
use in healthcare research in Aotearoa New Zealand.
What’s next?
Dr Huti Watson’s slide, Rakeiora keynote,
eResearch conference 2022

● Genomics Aotearoa data repository group
○ Mik Black - University of Otago
○ Ben Te Aika - GA Vision Mātauranga Coordinator
○ Rudi Brauning - AgResearch
○ Libby Liggins - Massey University
○ Miles Benton - ESR
○ Ben Curran - University of Auckland
● NeSI development team
○ Eiran Perkins
○ Jun Huh
○ Brian Flaherty
The AGDR Team

www.nesi.org.nz
@NeSI_NZ
https://data.agdr.org.nz/
https://www.nesi.org.nz/apply
support@nesi.org.nz
Thanks for listening

Moemoea nui Aotearoa: Challenges and Strategies in Data Lifecycle Management in New Zealand

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