(A flute and an oboe play extended notes over the sounds of wildlife in a light-filled forest. As the birds twitter, the music crescendos, hits a peak, and then all the sound vanishes.)
Julia Longoria: Can you introduce yourself? Who are you, and what do you do?
Rene Begay: So … Hmm. My name is Rene Begay.
And I will introduce myself in Navajo as well. So Yá’át’ééh, Shí éí Rene Begay yinishyé. Tótsohnii nishłį́, Tł'ááshchí'í bashishchiin. Táchii’nii dashicheii. Kinyaa’áanii dashinalí. Tselani déé’ naashá. [In English, “Hello, my name is Rene Begay. I am Big Water People, born for Red Ochre on Cheeks People. My maternal grandfather is Red Running into the Water People. My paternal grandfather is Towering House People. I am from Salina Springs, Arizona.”]
So I just told you my four clans in Navajo.
Longoria: Rene Begay says she thinks about her clans a lot. And not just in her Navajo world, but in her professional world too.
Begay: Because genetics, it’s about relatives. It’s about the future generation.
Longoria: She’s a geneticist. And family really is everything to her.
Longoria: So, when you hear someone say those clans to you, what goes through your mind?
Begay: I’m thinking about how they are related to me. Yes, I have one biological mother, but I could have multiple mothers—which is my aunts. You know, Navajo translation—they’re like little moms.
Longoria: So in this, like, initial introduction, you’re sort of trying to see if you’re blood-related somehow? Is that right?
Begay: Hmm … [Thinking about it for a beat.] Yeah, I wouldn’t characterize it as blood, necessarily, ’cause I think blood is kind of really a loaded term.
Begay: And I wish it wasn’t that way.
(More birds chirp over the sound of a synthesized whistle, moving in and out of harmonies and through branches, deeper into an electronic forest.)
Longoria: I wanted to talk to Rene because being both Navajo and geneticist is a pretty rare combination. The Navajo Nation actually banned genetic research from taking place at all on tribal lands.
So Rene sits at the center of two worlds that have been at odds with each other for a long time.
But recently, the U.S. government has tried to change that.
Begay: They conducted these, um, engagement meetings in the city—and this was in Denver.
Longoria: In 2019, government officials invited Native Americans to a meeting in a federal building in downtown Denver to essentially make a pitch to them for a new, ambitious genetic research program. This was obviously right up Rene’s alley. So she decided to go.
Begay: I knew there was tribal leaders there from different tribes.
Longoria: And she watched the scene unfold. Tribal leaders sat at a rectangular conference table facing each other as a group of white women, dressed in business casual, began their presentation.
National Institutes of Health PSA voice-over 1: (Over upbeat, inspirational music.) The All of Us Research Program is calling on 1 million people to join us as we try to change the future of health.
Longoria: The program is called “All of Us.”
NIH PSA voice-over 2: (Over more inspirational music.) What lies inside of all of us is more than data. It’s life.
Longoria: They’ve aired quite a few PSAs on TV. What they’re trying to do is recruit people to take part in this huge study from the National Institutes of Health.
Begay: They said, the goal of All of Us is to create health care that is individualized for each person.
NIH PSA voice-over 3: (Over light, bouncy strings.) Instead of one-size-fits-all! By gathering health data from 1 million people, our country’s best researchers will be able to develop treatments that are as unique and complex as we are.
Longoria: To accomplish this, they want our family health history, our geographic location, and samples of our spit, our urine, and our blood to create a giant genetic database.
(Over more emotional, cinematic music.)
NIH PSA voice-over 2: And what we find there will unlock mysteries, heal the sick, and eradicate disease.
Begay: I think it sounds like a really great idea, right? You know, really catering health care and medicine to an individual, because I know I’m not like anybody else.
NIH PSA voice-over 4: It is important for minorities to be a part of this, or we will again be left with medications that are created for—really—other populations.
NIH PSA voice-over 5: Why not? You know, why not participate? Why not be part of it?
Begay: They never really said, like, “This is a biobank. This is, like, a place where things are going to be stored, like bio-specimens and data.” It was very superficial language. And I still don't think tribal leaders understood what they were doing.
(The dramatic music fades out.)
Longoria: Then the presentation was over.
Begay: Somebody did ask for more clarification. They basically said, “Well, it’s on the website, and here’s the link.”
Longoria: This meeting was part of a big outreach campaign by the NIH. They’ve worked with many Native leaders and researchers to try to connect with their communities around the country in a meaningful way. But, according to Rene, tribal leaders at this particular session in Denver still did not seem like they were on board.
Begay: They kind of were like, “Okay.” Like, “This program seems okay, but … I don’t know. I just don’t understand it fully.” And they just kinda were like, “Okay, whatever. Do what you want, because the U.S. does whatever they want anyway.”
(A bed of strings play in a resonant, empty space. As bows cross the strings, the notes slide up and down, metal in the emptiness but still gentle somehow.)
Begay: I think that’s the wrong way to go about it.
(A long moment dwelling in the strings.)
Longoria: This week, a conversation with Navajo geneticist Rene Begay. We go back and trace the story of how the field of genetics lost the trust of Native Americans. And how Rene walked right into that same field. And what she thinks the future of genetics could look like.
I’m Julia Longoria. This is The Experiment, a show about our unfinished country.
(An electric guitar plays notes across the strings just for a moment, adding a melodic line. It fades—and so does the string bed, later—as the conversation continues.)
Longoria: You say blood is loaded. How is it loaded?
Begay: I think it’s loaded just because Native Americans who live in the U.S., we are given a piece of paper that says, “You're a quarter-blood, you know, whatever tribe. You’re half Indigenous.” I’m quote-unquote “full-blooded Navajo.” But then if I married somebody who was non-Native, my children are going to be half Navajo. And then if they marry a non-Native, then—as you can see—it gets diluted real quick.
Longoria: At certain points in our country’s history, blood has been crucial in deciding who is Native American and who is not.
Begay: But I’m pretty sure every tribe and every Indigenous person will tell you that that’s not a concept that we—we inherently know.
Longoria: She says one reason blood is loaded is that blood quantum—or percentage of blood—has been used by the U.S. government—and sometimes by tribes themselves—to tell people they’re not Native. But saying you're 50 percent or 25 percent or 2 percent Native blood fails to describe what it really means to be Native.
Begay: We’re more complex than just our blood. We have our languages, our traditions, our ceremonies, our, you know, ways of thinking—ways of knowing. And I will say that I think a lot of people want to be Indigenous and—and have Native American DNA, but they don’t want to live an Indigenous life. I mean, you can’t want to be Native but without living the life of a Native individual.
(The soft metal percussion of a kalimba plays up and down over extended string notes.)
Longoria: Long before she even thought of going into genetics, Rene grew up in rural Navajo towns outside Chinle, Arizona.
Begay: My mom was the second oldest. And she’s the female, so she’s taken on that role of the head of the family, because our culture is matrilineal and look to the female to make decisions, to guide. And it’s not an easy position.
You know, she was always the one that brought me to ceremonies. You know, ceremonies last all night. It’s equivalent to kind of going to church, right? When you go to church, you pray and you think about things that you want and things that you do have and things that you’re grateful for, and that’s very similar to what happens in ceremony.
But from when I was a little kid, I mean, probably before I could walk, I was in those ceremonies: learning, listening, seeing, engaging with all kinds of relatives, and really coming together in a social setting where we relied on one another to put this event on, right? You can’t do it alone. And if one person doesn’t do their job, then all the—you know, all the pieces don’t fit in place. And you learn, you know, where you fit.
Longoria: From an early age, Rene was taught by example that she was part of something bigger than herself. She was part of a larger family—and part of the natural world around her.
(The music fades out.)
Begay: You know, I was taught growing up to make sure that I am centered. And there’s this word called hózhó, and it means everything around you—above you, below you, in front of you—and everything’s in balance, ’cause we are sacred as human beings. So are animals, so are plants. And so is water, so is the land. Like, we’re all living beings, and we all have a place in this world. And if you start messing with that, you know, who knows what’s gonna happen.
Longoria: But messing with the balance of the universe, in a sense, is what scientific research is all about. Scientists investigate, dissect, and sometimes even tinker with nature in order to understand it or harness its power.
Longoria: You’re a genetic researcher. And I just wonder, why do you do what you do? Like, what made you fall in love with genetic research?
Begay: So I guess I should start by saying how I got started. So I actually went off the reservation for high school on a border town in Flagstaff, Arizona. And it was a difficult decision. I just felt like I wanted to really focus on my studies and focus on—on going to school and getting as much of the opportunities that non-Natives had.
Longoria: So she went to Coconino High School—a pretty big public school—and enrolled in the science and technology track.
Begay: And we had a whole room dedicated to, like, the science lab.
Longoria: Where she was first introduced to the scientific method.
(Plucky science-fair music plays. It’s synthesized, almost muzak-like, and rich with the feeling of exploration: a gentle shaking percussion, chords playing out long and slow, a bass line that moves but never too fast.)
Begay: We created these parachutes for eggs, and we had to make it as light as possible.
And then we walked up the stairs to the top of the high-school building, and we would line up along the edge. Our partner would be on the ground and we would, you know, hold the eggs in the air and drop it from the top of the building. And the goal was to make sure that your egg does not crack [Laughs.] when it hits the ground. [Longoria chuckles too.]
It appealed to me because it was hands-on. It was something I could see. And it was really neat to see, Okay, I built this. I dropped it. I put in the calculations, and this is what I can determine based on that.
Longoria: And did your egg crack?
Begay: No! Luckily. [Both laugh, Longoria a little more than Begay.] It was so fun that I thought, Okay, this is what, you know, science is all about. So that’s what I’m going to do. And ever since then, you know, I was hooked.
Longoria: She went on to study biology in college.
Begay: I didn’t really know at that time there was a concept called research. [Laughs.] But then I saw a flyer that said, [Longoria chuckles lightly.] you know, Do some research for the summer and get paid. So I said, “Okay, if they’re going to mentor me and pay me, then why not?” And I was in a—a lab that looked at chicken embryo hearts.
Longoria: This was the second egg experiment of her career.
Begay: It looks like, you know, eggs that you’ll cook in the morning, but [Both laugh.] obviously you—you—you shouldn’t be eating these. But, um, you crack the eggs and go—[Laughs.] go under the hood. [Longoria laughs a quick inhale.] And then the chicken embryo literally lays on top of the yolk. And the point was to figure out “How does the heart develop?”
Longoria: And part of the way she helped figure that out was to try and see what stopped the heart from developing.
Begay: I just remember doing hours and hours of clipping a certain part of the chicken embryo’s heart. It would just be the tiniest little speck for at least three hours straight and my eyes would go cross-eyed at this point.
Longoria: I wonder when you were first, like, clipping those chicken hearts, did you feel any hesitance about it? Did you, like, kind of think about your upbringing at all in those moments?
Begay: (Inhaling.) I did, um, because I—maybe that’s another reason why I was kind of like, “What’s research?” You know, because it was something that I didn’t think was something I should be doing.
This was potentially going to be an animal. If I’m dissecting these embryos, will it mess with me mentally, physically, emotionally, spiritually? Is this something that I need to be doing? Is it that important that I’m willing to, you know, maybe forget about where I came from?
I told my family about it, and I engaged in ceremony and prayer, just to make sure that I was being protected against anything that could harm me.
Longoria: Potentially hurting the development of a living thing felt like it violated her upbringing. She was, in a sense, messing with the “balance” of things. But maybe it had some greater benefit?
Begay: I thought about it in the context of “Okay, you know, it’s related to heart disease and heart development. And my people have heart disease, you know—high rates of it. So if I participate in this research project, then maybe I’m advancing our knowledge about heart disease.”
Longoria: By this time, Rene was ready to think about grad school, and which biological field she would specialize in, when a lab in Denver approached her to do genetic research.
Begay: During this time, I was taking a genetics course, and, you know, I didn’t do so well. [Both laugh.] I—I got a—I got a C in genetics! And I was like, “Genetics? I don’t know if I can do that.”
Longoria: But she decided to give this job a try. She moved to Denver, Colorado, and joined the lab. Immediately, it felt foreign.
Begay: I didn’t see anybody that looked like me. I just couldn’t really be myself. I couldn’t talk about these things that I’m talking to you about. I never talked about my culture, because I didn’t want to be, [A beat.] you know, kind of be othered, or, like, dismissing me as an individual and where I came from. I felt like I had two worlds going. So I never spoke about any of that.
Longoria: Still, she decided to stick it out. She dug into the work extracting DNA from blood and saliva samples from the study’s participants.
Begay: We look at, um, heart-muscle disease and to see if there’s a genetic component within these specific families. They would look at a specific individual, saying, “This person came into the clinic and they have, you know, heart disease and it’s probably genetic. We probably think it’s cardiomyopathy. And this is their family tree.”
(Light electronic bells play notes here and there, staticky and diffuse.)
Begay: This, you know, this is their mother. This is their father. This is their grandparents. This is their, you know, significant others. And it just made sense because I think about my family all the time, and I know what my clans are. I could see “Wow. Like, okay! They know their whole family tree. Like, this is a person I want to get to know because [Chuckles, and so does Longoria.] you know, they really took the time to, like, know who their relatives were and, like, map this out.”
So that’s kind of where I could visually see, like, “Oh, I could really get into this because it’s about family. It’s about relatives. It’s about [A beat.] the future generation.”
Longoria: As she kept growing as a researcher, she started to think about what her own research project might be.
(The bells go quiet, slowly and gradually.)
Begay: My idea was to translate what I was doing in the lab and seeing if that also affects my community back on the Navajo Nation.
Longoria: Sitting at her desk in the lab at the University of Colorado, she had a vision for the future of genetics. What if she could harness this field that felt cold and hierarchical and distant from her people—and make it theirs? What if she could use the Navajo people’s genome to identify and prevent diseases that affect them disproportionately?
(A piano plays heavy flourishes over a quiet drum track.)
Longoria: And sitting there, in the lab, she took her first step to achieve that vision.
Begay: I just Googled genetic research on Navajo Nation. (Laughs.)
Longoria: And what she found?
Begay: And it turns out there was a moratorium on genetics research on—within my tribe, which, I had no idea.
Longoria: Rene learned the Navajo Nation had banned all genetic research on tribal land back in 2002.
Begay: That's when I just kind of started more Googling and figuring out, like, why.
Longoria: That’s after the break.
(The music plays up louder for a moment, and snippets of voices and electronics intersperse between the piano notes. Then, the music ends.)
(Bird calls reverberate as an electronic organ plays three increasingly loud notes. Then, silence.)
Longoria: I’m Julia Longoria. This is The Experiment. And we’re back with Rene Begay, a Navajo genetic researcher who hoped to use genetic science to help her own people.
Begay: It never occurred to me that genetics research would be banned on the Navajo Nation. My family didn’t know about it. I mean, there’s still people today that don’t know about it.
Longoria: So she kept Googling. How did this happen? She traced the history of genetic research back to when scientists started figuring out how the human genome affects our bodies.
Begay: Everybody jumped on the opportunity to do sequencing of just anybody.
Longoria: Scientists believed—and confirmed, in some cases—that they could determine “This is the location on the DNA that makes hair blond. This little part here is what decides whether people are tall or short. This part over here means you’re vulnerable to heart disease or certain cancers.” And there was a hunger to find out more.
Begay: “We’re going to find out all the answers to diseases. And we’re just going to sequence everybody, and everybody’s going to be okay with it.” And I think researchers didn’t think about the issues around it—the ethical issues, the cultural issues, social, legal. They just kind of jumped in.
Longoria: And Googling, she came across one crucial example of this.
Begay: The Havasupai tribe, who live in the Grand Canyon. They’re a pretty small tribe, and they’re really remote. And they wanted to figure out why diabetes was running rampant within their community.
Longoria: So in 1989, the Havasupai tribe connected with a genetic researcher at Arizona State University.
Begay: The community consented—verbally or written consent—to collect samples.
Longoria: They wanted researchers to take those samples and figure out “Why are we getting diabetes at this rate? Is it something in our genetics?”
Begay: I’m sure they were thinking, Okay, well maybe it’ll take, like, three years. And then we’ll get some results back, maybe—but intended for the researcher to come back and at least give some updates.
(Soft, dreamlike music plays, syrupy and slow, synthesized and reverent.)
Longoria: A year passed. Three years passed. And then almost 15 years passed.
Begay: And the researcher never came back.
Longoria: During that time, the researchers published a report saying they couldn’t find a genetic reason for the high rates of diabetes. But some Havasupai were left wondering what happened to their samples. Until 2003, on ASU’s campus.
Begay: A student from that tribe was attending a lecture about schizophrenia, inbreeding and realized that those samples that were being talked about was from the Havasupai tribe. And actually said, “Did you get permission to study inbreeding and schizophrenia? Because I don’t—I don’t remember that being, [Laughs.] um, something that the tribe would want to know about.”
Longoria: The tribe says they never consented to any of this. They had just wanted to know why so many of them had had diabetes.
Begay: Which is unethical for, you know, research in general, because you should be doing what you said you would do.
Longoria: And they didn’t just use the Havasupai’s DNA to look into those medical conditions. They also looked into migration patterns and made some claims that contradicted the way the Havasupai saw themselves. The Havasupai claim deep roots in the area around the Grand Canyon, and the researchers say their DNA suggests they originally came from Asia.
Begay: A lot of tribes have their own histories and their own ways of thinking and knowing “Okay, well, I’m inherent to this land and where I come from, because of my origin stories, because of the traditional stories that have been passed on.” And genetics is trying to—in some ways—kind of dismantle that and contradict it or say, “Well, those are just stories.”
Longoria: And for the Navajo people, what happened to the Havasupai only reinforced their concerns.
Begay: The Indigenous populations? We’ve already been exploited for our land, our—our ways of life. I think they just knew that we don’t want to be poked and prodded, so they just kind of put a stop to it and said, “We have the power. We have the sovereign right to put a moratorium in place. So we’re going to do it, and just tell people, ‘No.’”
(The music shifts, stiller now. Then it fades out.)
Longoria: And you were learning all of this on your Google search, um, how did it make you feel?
Begay: I think initially it made me feel like I was in the wrong profession. I was in the wrong lab.
Begay: I shouldn’t have been doing what I was doing, because it’s not going to translate into helping anyone. Is this something I want to continue doing or pursuing?
In a way the moratorium helped me [A beat.] be more accepting of who I am.
Um … And I think that what I mean by that is that, as I was growing up, I don’t think I ever felt like I belonged anywhere. You know, “Why aren’t there more Natives doing things that I’m doing?” I think I just kind of felt lost a little bit. Like, I felt like, “Well, maybe my culture should not be No. 1. But then once I read that the moratorium was in place and the reasoning behind it, and their citations saying, “Well, because, you know, humans are sacred and DNA is sacred.” That really resonated with me. And I said, “Oh! Yes, like, I really resonate with that and that is so true, because that’s how I was raised.” And I think, from then on, I just really felt like, “Yes,” like, “This is—the way I’m thinking is important, and what I’m doing is important.” And the moratorium kind of confirmed that. And then I was thinking, “Well, I’m in a genetics lab, so maybe this is where I’m meant to be.”
(An echoey piano plays lush runs and then soft, sparse notes. A gentle melody—not distracting, but somber, serious, beautiful, expressive.)
Longoria: Basically, if not people like her, who would represent a Navajo point of view in the genetic field?
Begay: I just know that we need more Native voices in genetics research. I have a unique point of view, and I want to bring that to the table. So why not try and stick around and impart my knowledge and my experiences into this space? Um, because, you know, all the other white scientists have been doing that for years, so—and decades! [Laughs.] So why can’t I, you know, bring my—my experiences and what I think to the table as well?
Longoria: But just because Rene is sticking with genetics doesn’t mean she’s going to be a cheerleader for the field.
NIH PSA voice-over 4: It is important for minorities to be a part of this, or we will again be left with medications that are created for—really—other populations.
NIH PSA voice-over 5: Why not, you know? Why not participate? Why not be part of it?
Longoria: I wonder, like, what happens if the Navajo Nation is left out of this large database of people all over our country—um, information about their genetics, about their environmental concerns—to try to improve health outcomes. Do you see dangers of being left behind from that research?
Begay: (Without hesitating.) No, not really.
Longoria: (As if surprised by how quickly Begay responded.) No? (Both laugh.)
Begay: I don’t—I don’t—I don’t see a danger of … Like, you know, use those other people as guinea pigs. (Laughs.)
Longoria: I mean, do you see yourself as an advocate for this kind of testing at all?
Begay: S-sort of. I think I’m kind of half-and-half. [Both laugh.]
I can—I can see myself advocating for genetic testing [A beat.] if I know that there’s a known disease that is genetic in nature. Then I—I would say, “Okay, get genetic testing done to figure out what can be done right now with our current medicines. Um, but then, on the other hand, if you’re perfectly healthy, I feel like, you know, I would just be like, “No, you know, you don’t have those issues so we don’t really need to engage in genetics research unless you feel that your contribution to science is going to benefit somebody 30, 50 years down the road. Is that something you’re comfortable with? Because, you know, if you’re gonna decide, Oh, I want my DNA back at a certain point. So, you know, you really need to have—have thought about this. You know, what are you going to benefit from? And what are you comfortable giving up to these researchers or medical professionals when you provide your DNA to researchers?”
Longoria: What are you comfortable giving up? Personally?
Begay: (Laughs.) I think about this constantly, actually.
Begay: And I’m actually kind of grappling with that idea of, every time you go into the hospital, you’re providing, you know, blood, right? And you’re saying, “Okay, go ahead. Take it. Do your little tests and tell me if I’m healthy.” Right?
Begay: And that’s a part of routine standard of care. A lot of people don’t think about that. They don’t think twice about what they’re giving. But where does that sample go? Where does that go within the health-care system? Who’s handling it? What happens to it afterwards?
I guess, to get to your question of what am I willing to give up … I’m not willing to give up anything to basic genetic researchers for any studies at all, or even clinical trials.
Longoria: (Inhales.) So, you’re—you’re not willing to give any of your genetic information to research even though you ask people to give their genetic information as a researcher?
Begay: If I really felt, like, wholeheartedly that these researchers were trustworthy, and I honestly understood the science behind their research, and I knew where my sample was going and where it was going to be housed and the fact that I could, you know, retract all of my information at a certain point, then I guess I would.
And so if we can come together and decide, like, “Yes, this is something that we should undertake as a community—as a group of people,” then I’m all for it. I mean, it’s—it kind of goes back to the—the social gatherings in the ceremony. So like, you know, am I going to be the only one doing it? Or can I get some help? Do my people feel invested? Do they feel a part of this initiative? Do they—they feel like, “Yes, this is something that we need now”? And if that’s the case, then I’m all for it. “Okay. What is my role and what are the other people’s roles going to be?”
Because I want everybody to benefit from this and feel like this is—this is Navajo. Not having researchers and, you know, medical professionals tell us, “Hey, well, if you don’t participate, you’re gonna miss out.” No, we’ll—we’ll tell you when
we’re ready, because we have the ability to think for ourselves and—and we know who we are. So we’ll tell you when we’re ready.
(A slow rush of synthesizers play chords that slowly diverge, cascading down, celestial, effervescent.)
Natalia Ramirez: Rene Begay is pursuing her master’s of public health at Johns Hopkins University. She’s also a scholar with the National Human Genome Research Institute and a research assistant at the Centers for American Indian and Alaska Native Health at the University of Colorado.
This episode was produced by Peter Bresnan and Julia Longoria, with help from Tracie Hunte and Alina Kulman. Editing by Jenny Lawton and Emily Botein.
Fact-check by Michelle Ciarrocca. Sound design by David Herman, with additional engineering by Joe Plourde. Special thanks to Pauly Denetclaw.
Music by Tasty Morsels.
Our team also includes Gabrielle Berbey, Kelly Prime, and me, Natalia Ramirez.
If you enjoyed this episode, please take the time to rate and review us on Apple Podcasts or wherever you listen. The Experiment is a co-production of The Atlantic and WNYC Studios. Thank you for listening.
(The music plays for just a moment longer, and then the episode ends.)