5 Questions For… Keolu Fox
Keolu Fox, PhD, Kānaka Maoli (Native Hawaiian), is co-director of the Indigenous Futures Institute and assistant professor at the University of California, San Diego. What’s Next Health reached out to ask Dr. Fox about his work to advance Indigenous data sovereignty, and his Robert Wood Johnson Foundation-funded project with the Native BioData Consortium to explore a blockchain-based approach to collecting, managing, and protecting Indigenous people’s genomic data.
This interview is part of our 5 Questions For…Series, where we learn about the ways RWJF’s Pioneering Ideas for an Equitable Future grantees are helping us get to a healthier tomorrow — today.
Q: What do you hope to learn through this work? What do you hope to accomplish in the next twelve months?
A: Our project is rooted in something called “Indigenous data sovereignty,” which is this idea that our community should decide if, when and how data about us is collected, shared, and used.
Data is now the number one most valuable resource on planet earth — it surpassed oil in 2018. Genetic information specifically is tremendously valuable, and we’re realizing just how valuable thanks in part to the success of mRNA vaccines during the COVID-19 pandemic. Multiple companies are springing up every day using genomic technologies to deliver healthcare. Indigenous people’s genetic information is among the most valuable because the vast majority of individuals that have been sequenced are of western European ancestry. Also, the insights we get from the genomes of Indigenous people could be profound. For example, living at high elevations in the Himalayas has literally shaped the genome of our Nepalese and Tibetan brothers and sisters over time and could help us critically understand basic things like metabolizing oxygen. These insights are going to lead to new intellectual property and blockbuster drugs.
So we’re beginning to see we shouldn’t just give this valuable genomic information away. In fact, we should be in complete control of it. If not, then history will repeat itself and we will see the same extractive relationships from Colonialism form again.
We’re thinking big, aiming for vertical control of our genomic data. We’ve built the first-ever biobank on a reservation to hold our data. We’re building the community’s capacity to run the biobank — creating literacy and fluency around data sciences. We’re also building the infrastructure to share that data and conduct research with it.
That last piece — how to share the data to enable research that is done both by the Indigenous community as well as private industry and public entities like NIH — is what we’re exploring with RWJF’s funding. We’re borrowing blockchain, a technology that is more commonly associated with cryptocurrency, to see how we can break up and safely distribute data amongst people. What appeals to us about blockchain is its decentralization. But we’re also wary of its environmental impact — blockchain requires a massive amount of energy. So while we’re exploring blockchain with this project now, we’re also keeping our eyes on other technologies that might serve our community even better. For example, we’re thinking about privacy technologies such as homomorphic encryption and differential privacy. As Indigenous futurists, we will always use the most cutting-edge technologies to empower our people.
Q: What signals of the future or emerging trends were you noticing that led you to want to do this project?
A: There’s been a growing conversation around “land back” in our communities. We want to use our land to revitalize our culture and create opportunities for our people. That movement has definitely inspired me. To me, land back is data back. If I build my own data centers, and I have my own capacity for cloud computation, and control who is allowed to use it, that’s building land back.
Indigenous people have been practicing futurism for time immemorial. We have a saying that can be found in many of our Indigenous communities in the Pacific: I ka wā mamua, ka wā ma hope. It means “walking backwards into the future.”
And then we’re really thinking about climate change, and how we do this in balance with nature. Because data centers and this type of computing technology requires a lot of energy and produces a lot of heat. Dr. Noa Emmett Auwae Aluli, this incredible doctor who was a mentor to me and who recently passed away, would always say that “the health of the people is the health of the land, and the health of the land is the health of the people.” What he means is, the higher level of a relationship you have with the ʻāina and the moana — the land and the ocean — the healthier you’re going to be. As long as you tend to it and treat it as your chief, you will be healthy and it will be healthy.
Q: Looking ahead five, ten, fifteen years from now, how do you see this work contributing to a healthier, more equitable future?
A: We’re not just trying to publish more academic research papers. We want to build something that has a positive impact in our communities — something that provides economic impact through jobs and land back and positions the next generation of our people to participate in the next round of health moonshots. So, in five or 10 years, this might look something like having data centers and campuses on reservation land, and homesteads in Hawaii where we have freezers to store our own DNA and are collaborating with research partners on our terms. Maybe we’ll have a data trust established to negotiate those terms and conditions around protection of data and access. We’ll be closer to a future where Indigenous people are in complete control of their data.
Q: What one thing should people read, watch or listen to that will help them understand more about your ideas?
A: For a good primer on the issue of data ownership and control, I would recommend Privacy in Context: Technology, Policy, and the Integrity of Social Life by Helen Nissenbaum.
In the futurist realm, I would recommend The Age of Surveillance Capitalism by Shoshana Zuboff which explores our digital futures and The Collapse of Western Civilization by Naomi Oreskes and Erik M. Conway, which is written from the perspective of a Chinese historian in the year 3000 after the world has been devastated by climate change.
For a taste of Indigenous futurism, I would recommend a piece that Cliff Kapono and I wrote for Grow Magazine, titled Back to the Future, where we discuss how to couple ancestral solutions with new technologies — specifically synthetic biology — to promote climate resilience.
Q: What didn’t we ask you?
A: We started this work by imagining a future where Indigenous people are in complete control of their data, and then finding the solutions to get there. Indigenous people have been practicing futurism for time immemorial. We have a saying that can be found in many of our Indigenous communities in the Pacific: I ka wā mamua, ka wā ma hope. It means “walking backwards into the future.” A lot of cultures have special people that project and predict things, like a fortune teller or a forecaster. But making projections is a skill that actually anyone can learn and sharpen. It’s like exercising. For example, for their final papers, the students I teach have to describe the apocalyptic future, the dystopian future, and then the utopian future of a specific community that they’re a part of or work with and have good relations with. They have to forecast one generation, then 10 and then 100. It gets progressively more difficult, but you just keep at it — you keep going to the gym and working on building that muscle. It’s an essential skill as a scientist, because it’s literally hypothesis building.
The views expressed are those of the interviewee(s) and do not necessarily reflect those of the Robert Wood Johnson Foundation.
