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New Zealand eScience Infrastructure
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
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
2
Matariki in the night sky.
Photo courtesy of Fraser Gunn
www.astroimage.co.nz
Matariki
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
Matariki touches us all
3
The stolen stars of Matariki
Published 2018, Scholastic New Zealand
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
Matariki touches us all
4
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/
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
○
5
https://www.mbie.govt.nz/science-and-technology/science-and-innovation/research-and-data/te-ara-paerangi-future-pathways/
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
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
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
Our big numbers are small
CERN’s computer centre (Image: Maximilien Brice;
Claudia Marcelloni/CERN)
Globus global figures
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
Aotearoa Genomic Data Repository
Data Repository for Taonga Species
Co-designing genomics projects with Māori and
ensuring Māori data sovereignty.
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
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
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
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
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
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
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
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/
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
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.
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
○ AGDR
https://data.agdr.org.nz/
16
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
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’.
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
Sharing genomic data via Globus
20
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
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
New Zealand eScience Infrastructure
● 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
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
New Zealand eScience Infrastructure
www.nesi.org.nz
@NeSI_NZ
https://data.agdr.org.nz/
https://www.nesi.org.nz/apply
support@nesi.org.nz
Thanks for listening

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

  • 1. New Zealand eScience Infrastructure 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
  • 2. New Zealand eScience Infrastructure New Zealand eScience Infrastructure 2 Matariki in the night sky. Photo courtesy of Fraser Gunn www.astroimage.co.nz Matariki
  • 3. New Zealand eScience Infrastructure New Zealand eScience Infrastructure Matariki touches us all 3 The stolen stars of Matariki Published 2018, Scholastic New Zealand
  • 4. New Zealand eScience Infrastructure New Zealand eScience Infrastructure Matariki touches us all 4 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/
  • 5. New Zealand eScience Infrastructure New Zealand eScience Infrastructure ○ 5 https://www.mbie.govt.nz/science-and-technology/science-and-innovation/research-and-data/te-ara-paerangi-future-pathways/
  • 6. New Zealand eScience Infrastructure
  • 7. New Zealand eScience Infrastructure New Zealand eScience Infrastructure
  • 8. New Zealand eScience Infrastructure New Zealand eScience Infrastructure 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
  • 9. New Zealand eScience Infrastructure New Zealand eScience Infrastructure Our big numbers are small CERN’s computer centre (Image: Maximilien Brice; Claudia Marcelloni/CERN) Globus global figures
  • 10. New Zealand eScience Infrastructure New Zealand eScience Infrastructure Aotearoa Genomic Data Repository Data Repository for Taonga Species Co-designing genomics projects with Māori and ensuring Māori data sovereignty.
  • 11. New Zealand eScience Infrastructure New Zealand eScience Infrastructure 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
  • 12. New Zealand eScience Infrastructure New Zealand eScience Infrastructure 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
  • 13. New Zealand eScience Infrastructure New Zealand eScience Infrastructure 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
  • 14. New Zealand eScience Infrastructure New Zealand eScience Infrastructure 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/
  • 15. New Zealand eScience Infrastructure New Zealand eScience Infrastructure 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.
  • 16. New Zealand eScience Infrastructure New Zealand eScience Infrastructure ○ AGDR https://data.agdr.org.nz/ 16
  • 17. New Zealand eScience Infrastructure New Zealand eScience Infrastructure
  • 18. New Zealand eScience Infrastructure New Zealand eScience Infrastructure
  • 19. New Zealand eScience Infrastructure New Zealand eScience Infrastructure 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’.
  • 20. New Zealand eScience Infrastructure New Zealand eScience Infrastructure Sharing genomic data via Globus 20
  • 21. New Zealand eScience Infrastructure New Zealand eScience Infrastructure
  • 22. New Zealand eScience Infrastructure New Zealand eScience Infrastructure 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
  • 23. New Zealand eScience Infrastructure ● 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
  • 24. New Zealand eScience Infrastructure New Zealand eScience Infrastructure
  • 25. New Zealand eScience Infrastructure New Zealand eScience Infrastructure www.nesi.org.nz @NeSI_NZ https://data.agdr.org.nz/ https://www.nesi.org.nz/apply support@nesi.org.nz Thanks for listening