GA4GH standards implementation in the Rakeiora Genomics Platform supports data security and sovereignty in Aotearoa New Zealand

29 Jan 2026

The Rakeiora Genomics Platform implements GA4GH standards to strengthen trust and privacy within the precision medicine strategy of Aotearoa (New Zealand). Rakeiora is a research platform that integrates genomic information and patients’ health histories with genealogical knowledge that has been passed down from generation to generation, co-designed in partnership with Māori communities in Aotearoa.

By Jaclyn Estrin, GA4GH Senior Science Writer

In Aotearoa (New Zealand), there is a Māori legend that tells the story of Rakeiora, a renowned Tohunga Māori navigator who journeyed across uncharted seas in search of a new land that would sustain and nourish his people for generations to come. The story has inspired the name for a new frontier of discovery — this time related to the field of genomics, which holds a world of opportunity for the sustenance and support of human health through medical care tailored to an individual’s unique genetic makeup.

The promise of precision medicine inspired the New Zealand Ministry for Business, Innovation, and Employment (MBIE) to fund the development of the Rakeiora Genomics Platform. With the name gifted by Sir Selwyn Parata, a rangatira (chief) of the Ngāti Porou tribe, Rakeiora is a first of its kind research platform in Aotearoa New Zealand, co-designed by both Māori and non-Māori researchers in partnership with Māori indigenous communities. The platform integrates genomic and health data with Māori whakapapa (genealogical knowledge), utilising Global Alliance for Genomics and Health (GA4GH) standards, particularly Passports and htsget, to ensure responsible and secure data access and sharing.

The Rakeiora platform was co-developed by a large, multidisciplinary team. Clinical and academic researchers contributed from two areas of health genomics research: primary community care, co-led by Professor Phillip Wilcox, Professor Stephen Robertson, and Huti Watson, of the University of Otāgo and Ngāti Porou Oranga; and tertiary cancer care, co-led by Professor Cris Print and Dr Helen Wihongi, of the University of Auckland and Te Whatu Ora, respectively. Computational research innovation was contributed from New Zealand’s National eScience Infrastructure (NeSI) and the University of Auckland, co-led by Nick Jones, Dr Claire Rye, and Jun Huh.

“In Māori culture, ‘whakapapa’ is a living system of genealogical knowledge that connects people to their ancestors, land, and future generations. Community members have used it throughout history to understand identity, trace inheritance, care for collective wellbeing, and make informed decisions about health, leadership, and social responsibilities,” said Watson (General Manager, Research, Te Rangawairua o Paratene Ngata Centre of Research Excellence, Ngāti Porou Oranga). Throughout the platform’s development, the research team emphasised the medical value of whakapapa and prioritised Māori data sovereignty, or the authority to ensure data are collected, used, and applied in a way that best serves their community. 

Co-designing the platform with Māori team members

There are over one million people of Māori ancestry in the world. However, Māori communities have often been underserved and under-resourced, leading to gaps in healthcare delivery. Furthermore, Māori communities have historically had negative experiences with health research projects, particularly those led by Western scientists, through improper consent to use data and genealogical knowledge, disregard for cultural frameworks that inform research conduct, and disinterest in delivering value back to the community.

The Rakeiora team co-designed the genomics platform in accordance with tikanga — Māori ethical frameworks, cultural concepts, and fundamental values — to bring shared value back to the Māori community. The platform’s attributes, which emphasise secure data access controls, were determined by Māori team members early in the development stages. To establish trust and engaged participation, the researchers also held meetings in tribal gathering spaces, and used metaphors, tribal narratives, and storytelling as a way to increase the accessibility and relevance of the platform. 

Māori and non-Māori members of the research team engaged in a dialogue about the platform, discussing which attributes to include, what outcomes should be delivered back to the community, and how to ensure data sovereignty. Wilcox (Professor at the University of Otāgo), a quantitative geneticist and bioethicist said, “We designed the attributes that we wanted the platform to have that would incorporate our bioethics practices — our tikanga — which includes having Māori governance over Māori data as a principle.” 

One of the core attributes of the platform was the integration of genomic data with genealogical knowledge, with whakapapa. Wilcox said, “With whakapapa information — that is, the knowledge of ancestors who go back twenty, thirty, or forty generations — we can calculate the genetic contributions and therefore disease risks of individuals from that information, from a combination of historical genealogical records and health records of current generations.”

Through the analysis of genealogical information, either in place of or as a complement to genetic data, researchers are able to gain a holistic understanding of a patient’s medical background and deliver personalised and culturally appropriate healthcare. 

Implementing GA4GH standards to ensure data security and sovereignty

From the initial platform design stages, there was a collective acknowledgement that sovereignty over the samples and data had to remain with the individuals and communities donating information to the platform. To ensure transparency and security within the computational platform, the technical team incorporated safeguards that protect private and identifiable information. This was supported by the implementation of the Global Alliance for Genomics and Health (GA4GH) htsget and Passports standards, anchored by a commitment to securing human rights in line with the GA4GH Framework for Responsible Sharing of Genomic and Health-related Data.

GA4GH standards create a globally harmonised approach to genomic and health data access, storage, and analysis. Designed to be broadly applicable, these standards can be adapted to more optimally serve diverse geographical and cultural contexts. 

Rye (Product Manager Data, Digital Research Innovation and AI, University of Auckland) said, “We didn’t want to reinvent and make everything bespoke where it didn’t need to be. The idea was to look at international best practice, look at where we could reuse and adopt other people’s hard work, where it fitted, and bring together an ecosystem of best in world tools alongside our own innovations that could work in this context.”

The research team utilised the GA4GH implementation of htsget, an application programming interface (API), that enables precise retrieval of genomic data from a portion of the genome. Even if an individual’s whole genome sequence is available, htsget allows researchers to access and analyse only the information in the portion of the genome that is relevant to their study. By limiting the amount of data accessed, personally identifiable genetic information can remain private.

Access to this data is further protected through use of the GA4GH Passports and Authentication and Authorisation Infrastructure (AAI) standards. Through Passports and AAI, a researcher is assigned a securely-encoded “visa” — a digital identifier that includes information about which genomic datasets they are authorised to access. The Rakeiora platform uses the GA4GH-compliant ELIXIR AAI Resource Entitlement Management System (REMS) to manage participant data consents and researcher access and approval. 

“To help build trust, we restricted — where appropriate — visa granting,” said Rye. “Our use of htsget is really to restrict right down to the genomic region, so researchers will not get access to the whole genome if they do not need it. The visa and htsget combination allows for that mechanism.”

Additionally, the Rakeiora platform was designed in a way that federates data, virtually linking genomic information from several different sources. These include government databases and electronic health records across New Zealand. As an added layer of security, no raw data lives permanently within the platform, and no data can be downloaded from the platform. Authorised researchers can enter the platform virtually and run an approved workflow, only receiving the results as outputs. 

Alongside GA4GH products, the platform also aligns with other globally recognised standards, including the CARE (Collective benefit, Authority to control, Responsibility, and Ethics) Principles for Indigenous Data Governance and FAIR Principles that ensure data are Findable, Accessible, Interoperable, and Re-usable.

In discussing the benefits of utilising established global standards, Huh (Product Manager Innovation, Digital Research Innovation and AI, University of Auckland) said, “It gives us the flexibility to eventually collaborate with other projects that might be implementing the same standards.”

Scaling the impact of participatory and personalised health care

Globally harmonised health data standards, like those of GA4GH, offer a framework that can be adapted across a wide array of cultural contexts to establish transparency in health research, ensure data security, protect data sovereignty rights, and facilitate the evolution of international best practice.

The Rakeiora platform builds off of these standards, alongside Māori cultural frameworks, to be a resource for Māori communities that reside across the globe, not solely in New Zealand. The co-design process of the platform is a scalable and reproducible model for engagement with other indigenous and non-indigenous communities to incorporate their knowledge, including genealogical, into their medical care. 

Wilcox said, “We want to make sure that our communities, wherever they are geographically located, still have the ability to implement their cultural frameworks.” Empowering local communities to participate in health research and the development of health programmes can foster more personalised, informed, and culturally-relevant care. According to the Universal Declaration of Human Rights, everyone has the right to benefit from scientific advancements. Community-based research galvanises such advancements when it has direct value to the communities involved.

The legend of Rakeiora says that the Tohunga Māori navigator journeyed to explore the unknown beyond the horizon, seeking a home in which his people could flourish. Through community engagement, responsible data management, and respect for deeply rooted knowledge systems and cultural frameworks, the Rakeiora Genomics Platform embraces the same spirit of discovery, as it guides New Zealand’s journey to deliver personalised medical care.

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Further reference

Rye, C. E., Puketapu-Watson, H., Wihongi, H., Aika, B. T., Macartney-Coxson, D., de Ligt, J., … Wilcox, P. (2025). Rakeiora Genomics Platform: a pathfinder for genomic medicine research in Aotearoa New Zealand. Journal of the Royal Society of New Zealand, 55(6), 2481–2505. https://doi.org/10.1080/03036758.2025.2469626

Wilcox, P. (2024). With, not for: Increasing participation of indigenous populations in medical genomics by prioritising their ethical frameworks [Conference presentation]. GA4GH 12th Plenary, Melbourne, Australia. https://www.youtube.com/watch?v=KE3bfqaKJtY&t=20268s