A Call For Equity In Genomics Research : Short Wave In the future, genomic research could lead to new treatments for human disease. It turns the data in our DNA into a global commodity. But historically, minoritized communities have been left out of this research. Keolu Fox is a genome scientist trying to change that and advocate for a more equitable approach when Indigenous and other underrepresented communities do participate.

Read Keolu's paper, "The Illusion of Inclusion", in the New England Journal of Medicine.

Reach the show by emailing us at shortwave@npr.org.

A Call For Equity In Genomics Research

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SOFIA: When you think of resources on Earth, what do you think of? Maybe you think about water or oil - timber, perhaps. What about data, our data, the information stored in our DNA?

KEOLU FOX: Genome sequence data itself can be used and aggregated as a resource. In that sense, it's no different than diamond mining, coal mining, right? Like, it is a resource, and, in fact, we should start treating it as such and recognize its value.

SOFIA: That's Keolu Fox. He's a professor at the University of California, San Diego, and a genome scientist.

FOX: I mean, I've been thinking about diversity and genetic variation for pretty much my whole life as a Hawaiian person. You know, my ohana, my family is from the Big Island of Hawaii. And this is a place that has just tremendous biological diversity.

SOFIA: Over the years, Keolu's worked on projects gathering in comparing DNA sequences, often in hopes of finding a genetic cause of a disease or even developing a treatment. But early on in his career, he noticed this research left a lot of people out, like the one time he realized none of the participants in a study were Polynesian.

FOX: And that made me extremely upset. It was like the boat had left for the future predictive and preventative medicine, and my people weren't included on the boat. And I remember, like, digging into that question like a pit bull on a bone. That's how I kind of stumbled upon a lot of these statistics and numbers.

SOFIA: At the time, 96% of participants in genome studies were of European descent - 96%.

FOX: And that just lit a fire under my ass. And I knew that was going to be my calling.

SOFIA: So that's what Keolu focused on - increasing the participation of minoritized communities, especially Indigenous communities, in genetic studies and databases. But here's the thing. Eventually, Keolu figured out that wasn't enough. This wasn't just an issue of representation, but one of Indigenous data sovereignty.

FOX: Understanding, who is in control of that data? Who is protecting it? Who provides access to it? How do we put communities in a position of power and control? So they're controlling the resource so that they benefit greatly from that.


SOFIA: Today on the show, rethinking ownership in genomic science, how to make the field more accountable and create an equitable future. I'm Maddie Sofia, and this is SHORT WAVE from NPR.


SOFIA: So before the break, we talked about how Keolu first noticed a lack of diversity in genomics. He was working with these databases and noticed a lot of minoritized communities were left out. And as he began to interrogate that, he made two key observations.

FOX: One of the reasons is more around comfort and convenience. It's like if you are a Western European ancestry doctor, it's much easier for you to recruit white people within your network, right?

SOFIA: Sure.

FOX: And then on the other side of the coin, it's really hard to recruit communities of people who have historically been exploited.

SOFIA: Exploited by the medical and scientific community, traumatizing experiences with lasting impacts like what happened to the Havasupai Tribe from Arizona.


SOFIA: So back in 1989, researchers at Arizona State University and the Havasupai agreed to partner up to determine if there was a genetic reason behind the really high rates of diabetes that have plagued the tribe for decades.

FOX: But when Arizona State turned around and questioned the Havasupai nation's origin story, tried to look for genetic associations with schizophrenia and assessing mutations that are associated with interbreeding, it naturally pissed off the community because that's not the arrangement and the consensus that they built.

SOFIA: Not only did the researchers not get consent to look at those things, some of those questions in themselves deeply disrespected the tribe's most sacred beliefs.

FOX: So that resulted in the sort of ripple effect or domino effect with many other tribes in the United States of America putting a moratorium on genetic research, which stands to this day.


SOFIA: Here's the other thing. It's become more and more clear that, a lot of times, these health disparities like diabetes in the Havasupai Tribe aren't really even because of genetics. They're more about socioeconomic factors like access to healthy food and health care.

FOX: A lot of the times when Indigenous populations or brown, Black and underrepresented populations of people are recruited into studies, it's under the guise of reducing health disparities and sort of pandering towards this narrative that there's an innateness to why our communities have higher rates of common, complex disease, right? And that's highly problematic. And I have sold that grant narrative in so many grants and papers. And that's how I've kind of come to this position of questioning it and being skeptical of what the actual benefit has been.

SOFIA: A lot of people that have given up their DNA for these studies haven't really benefited that much. In fact, many genomic studies have yet to actually result in drug therapies, and even when they do, that doesn't necessarily mean participants get easy access to them.

FOX: In the case of cystic fibrosis drugs developed by the company Vertex, these drugs hit the market. And they're $300,000 a year, which basically panders towards our broken health care system and our broken insurance systems. And we need to take stock of our values and understand why that's the status quo. Like, how is this happening in the United States of America in 2020?

SOFIA: Right. So the idea, Keolu, is essentially that even if the communities that are being asked to give their DNA to these studies, even if a drug is made that maybe could help with some condition that's in the community or, you know, whatever, that doesn't necessarily even lead to those communities having access to that drug or, you know, getting any kind of cut of whatever money they make from that drug.

FOX: That's right. Yeah. Even if a blockbuster drug is developed using DNA and, you know, mutations that were discovered in a population that earned those through their diaspora, that doesn't mean that they're going to receive any benefits or royalties from the drug. It doesn't mean that they're going to receive subsidized access to that drug. And in a lot of cases, we're talking about communities that don't even have health care, so how would they receive access to the drug in a broken health care system in the United States of America?

SOFIA: Let me ask you this, Keolu. If you had the ability to start over and say, these are the ways that we are going to be more effective and to work more equitably with smaller communities, communities that have been minoritized, that have been exploited, like, what is - if you could do it all over and say, this is the right way to do it, how would you do it? How should this research be done?

FOX: That's a great question. If I was to do it all over, I would build projects around something called benefit sharing.


FOX: If we use benefit sharing as like our centering point of development and a philosophy or an idea that if we create revenue around the development of a mutation, whether it leads to the development of a blockbuster drug that's found in a population in Nepal or something like this - right? - we need to think about circular economic structures that benefit the community. So will five to 10% of the royalties developed from data derived from X community go back into a community trust? And will that community trust then be used to support conservation projects, cultural revitalization programs, medical health care programs, education programs, efforts to buy back land that was originally tended to and protected by those Indigenous communities?


SOFIA: To Keolu, this is all about breaking down systems of colonial exploitation, which means you can learn lessons from other industries that have started to address some of that damage. Specifically, he points to the progress that some in the diamond industry have made.

FOX: You can look at all of the progress since the 1980s to now in the way that the Botswana government has been involved in creating circular economic systems with local diamond mining companies and foreign diamond mining companies, some of which are in Canada. And they've been able to create benefit-sharing models that directly benefit the communities in Botswana. And I think that is just tremendous.

SOFIA: If this all sounds cut and dry, that's because, for Keolu, it is. Replace the old system with one where communities giving their genetic info are able to collaborate throughout the process and get something out of it.

FOX: I mean, even more simply put, have you ever heard of Robin Hood - steal from the rich and give to the poor?

SOFIA: (Laughter) I have indeed heard of it, yes.

FOX: Yeah. So if anything comes out of this and what our, you know, listeners need to take away from it is is like when we develop these drugs, I mean, it's really serving a handful of stakeholders disproportionately. Why can't we redistribute some of that money to the communities and build real, authentic community-based programs or engage them as stakeholders and stockholders in the development of drugs that are derived from their genomes? That doesn't seem that crazy to me. Call me the Hawaiian Robin Hood of genomics, but I think that's the future. That's the path towards a more equitable, socially, culturally sustainable modality of creating partnership agreements that involve federal governments, private industry in the form of big pharma and communities.

SOFIA: Right. So I'm thinking about how you are a native Hawaiian. You are a scientist. You are a man. You are all of these identities. And I'm wondering, you know, you're part of the field of genomics that has exploited communities, you know, like the one that you come from.

FOX: Right.

SOFIA: So what has that experience been like for you just simply existing in this field?

FOX: Yeah, that's a great question. We do occupy, you know, multiple identities. And we, you know, you oscillate between like your kuleana and values as a Hawaiian person, in my case, for a lot of things or your values as a genome scientist or ways that you can actually use science to achieve justice and understand certain things. So initially when I was younger, I started off as an archaeologist.

SOFIA: In this one project, Keolu got to examine the early life of Frederick Douglass, his life as a slave before becoming the great abolitionist.

FOX: And I remember thinking, here I am, a non-Black person interpreting the material culture of one of the most impactful human beings in the history of America, the American Lion, this abolitionist. And I'm not Black. And why do I have this privilege? And I remember thinking that. And that's something that I don't think a lot of my white colleagues go through. They don't think about what a profound responsibility it is and privilege it is to interpret the genomes of someone from a community that you're not a part of. I don't think that many of my colleagues have even reflected on what that means. It's just data to them. But you have to go through the motions of feeling uncomfortable and seeking and prioritizing new scientific questions that are actually going to have impact in the communities that you want to affect.


FOX: All right, Keolu Fox, I appreciate you. I appreciate your brain. Thanks for talking to us today.

FOX: Of course.


SOFIA: Today's episode was produced by Rebecca Ramirez, edited by Viet Le and fact-checked by Ariela Zebede. Engineering support from Patrick Murray. I'm Maddie Sofia. You're listening to SHORT WAVE from NPR.

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