Rolling out Benefit Sharing in Aotearoa New Zealand
How Variant Bio worked with local partners to identify meaningful benefit-sharing initiatives for Māori and Pasifika communities
The 1992 Convention on Biological Diversity (CBD) marked one of the first international efforts to ensure a fair and equitable sharing of the benefits of genetic resources [1], requiring mutually agreed upon terms and access to benefit-sharing. However, the CBD did not include any specific language recognizing Indigenous peoples’ and local communities’ rights to their genetic resources. It took another 18 years before the Nagoya Protocol (NP), as a supplement to the CBD, would attempt to address this gap. The 105 parties and 92 signatories to the NP committed to “respect, preserve and maintain knowledge, innovations and practices” of Indigenous peoples and to uphold the equitable sharing of benefits [2].
Variant Bio has made a formal commitment to benefit sharing with our partners
Despite the United States being notably absent [3] from the NP parties and signatories, Variant Bio, a Seattle-based company, has made a formal commitment to benefit sharing with their partners. In New Zealand, Variant Bio is collaborating with the University of Otago (UoO) on a project focusing on understanding the genetic contribution to certain metabolic disorders and specifically working with the Māori and Pasifika communities living in New Zealand. You can read more about this project HERE. Because this study began over a decade ago and we are unable to contact participants directly, we are using benefit sharing funds to support organisations that serve the groups represented in the study — the Māori and Pasifika Community.
To learn more about our general benefit sharing commitment you can read this blog post written by our CEO, Andrew Farnum. Our program supports both short-term benefits (subject of this post) and long-term benefits, where we share a portion of our revenue with partner communities. Our full Benefit Sharing Pledge is available on our website, HERE. This innovative approach was developed as a direct response to the long history of research exploitation and is something we hope becomes the industry standard.
After 6 months of consultations performed by Variant Bio Standley Fellow Anezka Hoskin (Ngati Kahu, Ngati Porou, & Te-Aitanga-a-Hauiti), we are proud to announce that we have finalized our short term benefit distribution in New Zealand. The benefits equal $100,000 USD for this project and have been equally distributed across five Māori and Pasifika initiatives. The overall goal of this program is to support local initiatives and NGOs that work with relevant interest groups and fund projects involved in areas such as: capacity building, education, healthcare, and sustainable development. Local communities actively participated in deciding how the funds were distributed based directly on their needs.
Benefits of Research
Beyond financial benefits, we deeply hope this research contributes to a better understanding of disease progression and that findings can be ultimately applied to improving patient treatment. Professor Tony Merriman has been researching gout and other metabolic disease in New Zealand for many years and remains deeply committed to working with Māori and Pasifika communities. Tony has partnered with Variant Bio to study the genetic causes of kidney disease and related metabolic disorders in people of Māori and Pacific ancestry. In Tony’s blog post ‘Studying Metabolic Disease in Aotearoa: A New Partnership Between Variant Bio and the University of Otago’ he says, “Our hope is that the information we gain from this study will ultimately lead to both the better use of existing drugs and the development of new drugs and diagnostic tools for kidney disease, thus improving the health of Māori and Pacific communities in particular, as well as people around the world more generally.”
Below is the list of initiatives that Variant Bio is supporting in New Zealand:
SING Aotearoa Conference
The first initiative we supported took place as the project initially got off the ground. In January 2020, the University of Waikato was home to the inaugural SING 2020: Indigenous Genomics Conference, co-sponsored by Genomics Aotearoa and Variant Bio. SING, short for “Summer internship for INdigenous peoples in Genomics,” is a one-week intensive workshop organized by the SING Consortium to explore the methods and problems of genomics as a tool for Indigenous communities. SING 2020 brought together members from SING Aotearoa, SING USA, SING Australia, and SING Canada to promote Indigenous partnerships in genomic science. Over the two days of the conference, talks covered a range of important topics, such as how to engage underrepresented communities in research and healthcare, how to disseminate cultural knowledge, best practices around consent procedures, Indigenous biobanking initiatives, self-governance and data stewardship and the advantages of carrying out community consultations before conducting research. Initiatives like this are important because they support Indigenous researchers who work in their own communities and represent their own views and perspectives.
Pukapukan Community Center
Anezka started her benefit sharing consultation process by visiting Nuku Rapana, the President of the Pukapukan Community Center. Pukapuka is a small atoll that is part of the Cook Islands nation in the Pacific ocean. The Pukapukan people consist of approximately 500 inhabitants on the island itself, ~5000 in Auckland, and ~3000 in Australia. After taking careful consideration of the community needs, it was decided that the benefit sharing funds should be used for scholarships to send Pukapukan students to university to gain research experience and skills. The funds were sent directly to the Pukapukan Community Center, which will select the students to support according to their internal processes. Their aim is to encourage their own research champions to step forward, and provide them with resources to keep going.
Te Whānau o Waipareira
Te Whānau o Waipareira is a West Auckland healthcare provider that provides a wide variety of services covering health, housing, social justice and education. Variant Bio has committed funds to specifically support the Ngā Tini Whetū program, a recent Te Whānau o Waipareira-led initiative that has been designed to empower whānau to build capacity in order to flourish and to reach their own aspirations. Note: Whānau is often translated as ‘family’, but its meaning is more complex. It includes physical, emotional and spiritual dimensions. Whānau can be multi-layered, flexible and dynamic.
Pacific Scientist and Community Network and the Tongan Health Society
Pacific Scientist and Community Network (PSCN) and the Tongan Health Society (THS) (www.tonganhealth.com) are both located in Auckland, New Zealand. THS provides health and social outcomes for all New Zealanders in the communities they serve (West and South Auckland), particularly Tongan people. The PSCN and THS are working together to host two community initiatives. The first community initiative to be held is a follow up fono to the Inaugural Pacific Peoples Fono in the community, Måür Lelei, hosted by the Pacific Scientist Network in June 2021 (see attached flyer for details about the fono). Note: fono means meeting. The conference feedback highlighted that community members want more interactions with researchers around the themes of genetics. The first fono was a huge success, and the Minister of Pacific Peoples Aupito William Sio has already agreed to attend the next fono in September. The second community initiative will act as the first strategic planning session for a Pacific Summer Internship for Indigenous Genetics (SING). The purpose of the Pacific SING will be to create a network of Pacific peoples with an interest in genetics. The strategic planning session will include selected individuals with experience organising SING Aotearoa and working with Pasifika communities. The session agenda will include items such as the internship scope, date, location, funding, guest speakers, workshop topics and workshop teachers.
Pacific Trust Otago
Pacific Trust Otago (PTO) is located in Dunedin (www.pto.nz). Pacific Trust Otago has evolved from a small health provider to include social enterprise and business development opportunities for Pacific people in Dunedin.. The PTO management team decided on the following fund breakdown. $10,000 USD will be dedicated towards the STEM scholarship program. Every year Pacific Trust Otago will provide two financial scholarships, valued at $500 NZD to support students studying in a STEM field. In order to be eligible the students must be Pacific Island ethnicity and between the ages of 15 to 18 years old. $10,000 USD will be dedicated towards assisting in funding Pacific Trust Otago weekly community projects that do not have sufficient funding. The funds will assist Pacific Trust Otago to cover costs for an additional 12 months.
It has been a privilege to facilitate benefit sharing in New Zealand, but we need more companies to acknowledge the contributions of research participants and communities through benefit sharing initiatives. Variant Bio is happy to lead this charge and to develop breakthroughs not only in science, but in ethics.
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