Promoting Indigenous Genomics in Aotearoa
Aotearoa, the Māori name for New Zealand, means “land of the long white cloud.” From what I’ve recently learned, cloud variations helped early Polynesian navigators find the islands, and they accompany me as I make my way to the University of Waikato in Hamilton, on the North Island. After 24 hours spent on various planes I find myself distracted by the beautiful landscape, which makes driving on the left even more challenging.
This January, the university 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 possibilities and problems of genomics as a tool for Indigenous peoples’ communities. SING 2020 brought together members from SING Aotearoa, SING USA, SING Australia, and SING Canada to promote Indigenous partnerships in genomic science.
Since our founding, Variant Bio has found inspiration and example in the SING Consortium. In fact, our approach to ethics and community engagement draws directly on the principles outlined in SING’s framework for enhancing ethical genomic research with Indigenous communities. You can imagine how honored, excited, and anxious I was, then, to be included in SING 2020, the first genomics conference of its kind. Almost all of the speakers at the conference are Indigenous, giving these all too often unheard voices a platform to talk about their work (e.g. genetics, vulnerable community health, diagnostics) and how they want to engage or not with non-Indigenous researchers. By sponsoring the conference, Variant was able to give back to SING through our capacity-building program for groups underrepresented in genomic sciences.
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 and the sensitivity required to work with certain groups, best practices around consent procedures, Indigenous biobanking initiatives, self-governance and data stewardship, and the advantages of carrying out community consultations before conducting research. Maui Hudson, a Māori researcher from the University of Waikato and one of the leaders of SING Aotearoa, spoke about an innovative system of biocultural labels he is working on with Jane Anderson, an anthropologist from NYU. The idea of these labels is that, in the future, they can be attached to physical artifacts and genetic data in order to track their source and usage permissions, and thus be useful for researcher accountability to journals like Nature Genetics, whose chief editor, Catherine Potenski, was in the audience.
In the final plenary session of the conference, which covered the future of genomics and public-private partnerships on genetic data and diagnostics, I gave a talk introducing Variant Bio. I’d been up most of the previous night with a pretty terrible stomach bug that was making the rounds at SING and causing the rearrangement of the order of speakers, but luckily I managed to deliver the message I came to present. In short, I argued, we need to move beyond the status quo that has led us to this point and instead adopt an alternative approach to how underrepresented communities can engage with researchers, especially private entities around genomics research. To do this, Variant Bio is following a circular economy model that begins with the communities themselves. By sequencing diverse populations’ genomes and collecting phenotypic information, this data can in some cases lead to discoveries that are informative for developing therapeutics. These drugs can in turn improve patient outcomes and the participating communities can benefit through our long-term benefit-sharing program. This is the key idea behind our company, and one that was well received by the audience.
The conference ended with a Māori karakia, a kind of prayer used to bring about spiritual guidance and protection. Although this is a frequent occurrence at important meetings throughout New Zealand, this setting and context of this karakia brought many of SING2020’s participants to tears.
