In the 1990s a liberal population geneticist launched the Human Genome Diversity Project. The goal was to sequence the genomes of “isolated” and “disappearing” indigenous groups throughout the world. The project did not go as planned—indigenous groups protested it, and scientists and anthropologists criticized it. This episode examines what went wrong and asks the question: can anti-racist scientists create racist science?
About Innate: How Science Invented the Myth of Race
“The Vampire Project” is Episode 4 of Innate: How Science Invented the Myth of Race, a podcast and magazine project that explores the historical roots and persistent legacies of racism in American science and medicine. Published through Distillations, the Science History Institute’s highly acclaimed digital content platform, the project examines the scientific origins of support for racist theories, practices, and policies. Innate is made possible in part by the National Endowment for the Humanities: Democracy demands wisdom.
Credits
Hosts: Alexis Pedrick and Elisabeth Berry Drago
Senior Producer: Mariel Carr
Producer: Rigoberto Hernandez
Associate Producer: Padmini Raghunath
Audio Engineer: Jonathan Pfeffer
“Innate Theme” composed by Jonathan Pfeffer. Additional music by Blue Dot Sessions.
Resource List
Basically, We Are All the Same, by Paul Salopek
The Human Genome Diversity Project, by Luca Cavalli-Sforza
The Human Genome Diversity Project and Its Implications For Indigenous Peoples, by Debra Harry
Patent Nonsense, by Philip L. Bereano
Race to the Finish: Identity and Governance in an Age of Genomics, by Jenny Reardon
Superior: The Return of Race Science, by Angela Saini
Transcript
Lisa: Welcome to Innate How Science Invented the Myth of Race. This is episode four, the Vampire Project.
Lisa: Hi, Rigo.
Rigo: Hi, Lisa.
Lisa: So, I know you’ve got a story to share with me today?
Rigo: I want to introduce you to Judy Gobert. She’s part of the Bitterroot Salish Tribe in Montana, and she’s a scientist with two PhDs. One in microbiology, and another in biochemistry, from the University of Montana. And, you could say she’s a grassroots scientist.
And she doesn’t think science should just be for its own ends, but for the actual material needs of her people.
Judy Gobert: We need our own scientists for our own reasons because we need to be the one to determine how much sediment is in that lake, so that we can protect our fisheries. We need to be the ones determining how much pollution is in the air so that we can keep our air quality better. We need to be the ones out there, in those mountains, determining how much deadwood we have, so that we can take care of our own fires. You know, so we need our own scientists, to do our own science.
Rigo: I think it’s fair to say that Judy has always been skeptical of non-native scientists, but this feeling really solidified in 1994, when she heard that a geneticist wanted to draw blood from people in her tribe.
Judy Gobert: So, I started digging around, and it was called the Northern Mountain Ecosystem Study, so, so we were considered part of an ecosystem study, and there was tribes from all of Montana included in that study, that they wanted to collect their DNA from.
And I was like, so, why are they putting this human genetic study underneath a primarily animal study? And I said, this seems really shady, hiding it out. And then, the tribal council secretary at that time said, “I have a friend, down in Nevada. Her name is Deb Harry, and you guys need to talk.” [laughs].
Debra: Good day everyone. My name is Deborah Harry. I’m, uh, from a place called Pyramid Lake, uh, in Northwestern
Rigo: Debra Harry is an associate professor of Race, Gender and Identity at the University of Nevada, Reno. She is a lifelong indigenous organizer, and have been keeping an eye on genetic projects that might affect indigenous people.
Debra Harry: I really m- mainly call myself a protector. Protector of my people, my land, our rights. Our future generations are always at the forefront of my interests and concern.
I never expected to spend so much time and energy and work in analysis on genetics, but these projects came knocking at our door, and we had to respond.
Rigo: Debra told Judy about something called the Human Genome Diversity Project. It was a genetics project aimed at collecting the DNA of more than 400 indigenous tribes from around the world.
Judy Gobert: So, she emailed me some paperwork, and showed me this study that the Human Genome Diversity Project was proposing, and there you go, all of the 10 tribes in Montana was included in their study.
Rigo: Judy went to Nevada to meet Debra, and to learn more about the project.
Judy Gobert: 1994 was like an, an eye-opener, and I came back and I was hot. And I went to the tribal council and I gave them a presentation. I think I still have my very first [laughs] PowerPoint I gave to them.
Rigo: Judy and Debra had seen outsider scientist helicopter into their community, dictate terms, and leave once they got what they wanted. They were determined not to let this happen again.
This is a story about well-meaning scientists, going into communities with a lot of assumptions, and an unwillingness to accept different systems of knowledge, and different ways of understanding the world.
It’s a story about what happens when Native people fight back.
We’ll hear from Judy and Debra later, but first, we need to take a genetic detour.
Lisa: Chapter One: Statistical Racism.
Okay, Rigo, I have a lot of questions, and the first and foremost is, what exactly is the Human Genome Diversity Project?
Rigo: To understand the Human Genome Diversity Project, we have to go back to the 1990s and early 2000s when genetics was all the rage. Maybe the most famous venture is the Human Genome Project.
Bill Clinton archive: We’re here to celebrate the completion of the first survey of the entire human genome. Without a doubt, this is the most important, most wondrous map ever produced by humankind.
Lisa: I like the image of a map. It’s a neat way to visualize something that is invisible, happening inside our bodies.
Rigo: And just for the listeners, can you explain a little bit about how DNA works?
Lisa: Sure.
So, each person has a genome, and the genome is your complete set of DNA in your body. And DNA, of course, is a molecule inside your cells, that has all the genetic information responsible for the development and the function of your body.
There are four chemical bases that make up DNA, and each one has their own letter, A, T, C and G. So, when scientists are sequencing DNA, what it means is, they’d have taken a sample of it, in the form of saliva or blood, and then they’re looking to see what order or pattern those letters fall into.
Again, A, T, C and G.
Here’s one way of thinking about it, if the genome is a book, then A, T, C and G are letters inside the book. Everyone’s book is basically the same, but there are slight variations in how the letters are arranged.
Rigo: Thank you for that. And here’s Bill Clinton again.
I believe one of the great truths to emerge from this triumphant expedition inside the human genome is that, in genetic terms, all human beings, regardless of race, are more than 99.9 percent the same.
Rigo: The Human Genome Project sequenced more than a dozen people, both female and male, and people who self identified as Hispanic, Asian, Caucasian and African American. The idea was to make a, sort of, composite of every person. And this gave a snapshot of how the human genome generally looks.
The main reason I’m bringing this up is to say that the Human Genome Project is not the Human Genome Diversity Project, that project that Judy and Debra are so worried about.
Lisa: How about we just call the Human Genome Diversity Project, the Diversity Project so that we don’t mistake it for the Human Genome Project? Does that make sense?
Rigo: Great idea. Here’s Jenny Reardon, the author of Race to the Finish: Identity and Governance in the Age of Genomics.
Jenny Reardon: The Human Genome Diversity Project was a response to the Human Genome Project to say, look, we need to look at the diversity human genomes. We have to look at multiple human genomes. You know, there’s many ways to do that, but, at the time, the idea was to go around the world, and collect blood samples, and extract the DNA from that blood of Indigenous peoples.
Lisa: Okay, so they’re saying, if we want a really full picture of human diversity, we need to randomly sample way more people from across the globe? That makes sense to me. But, the proposal to sample just the DNA of indigenous people? That I don’t really understand.
Rigo: I think, to answer this question, the focus should be on the word ‘diversity’. They weren’t just thinking of diversity in terms of numbers, more people more diversity. They were thinking about diversity in the actual genomes of people, how the letters are arranged.
They thought indigenous people’s genomes were different than the rest of the population, and so, this is the diversity they were looking for.
Lisa: Um, so diversity in their terms mean two different things. They wanna look at more than 12 genomes, and they also wanna look at genomes that they think are going to be different than most people’s?
Rigo: Yeah, exactly.
Lisa: Here’s something I wanna know, let’s talk about the people behind the Diversity Project.
Rigo: The main guy was an Italian geneticist name Luigi Luca Cavalli-Sforza. Here’s how one of his colleagues describes him.
Greely: He had a very courtly European style about him, but he was also very, could be very down to earth, and very funny. He was someone you remembered. He was not an average person, um, and
I liked him quite a lot.
Rigo: Luca was a capitalist scientist. He was a star in his field, and a professor at Stanford University. And I wanna show you a clip from a documentary he’s in.
Journey of Man: Evolution is history. Biological evolution is a genetic phenomenon.
Lisa: So-Wow. Okay. This is, like, a palace. This is an actual Venetian palace [laughs]. Rigo, oh, look at the body guards. They’re, like, opening the doors for him..
[laughs] It’s beautiful.
Okay, he’s actually in a Venetian palace. I’m starting to get a picture of things.
Rigo: So, besides being very stately, Luca was also known as an anti-racist. In 1973 he debated William B Shockley.
Lisa: Oh, William Shockley. Unfortunately I know that guy. He was a racist engineering professor, who called for the sterilization of women from “inferior races”. So he and Luca would’ve been colleagues at Stanford, right?
Rigo: Yeah, that’s right. So, he had science cred, and anti-racist cred. Luca and his colleagues proposed the Diversity Project for the first time in 1991.
The proposal of studying a collection of cell lines, from people in the world that would be available to all students. Now, this was called Human Genome Diversity project.
Rigo: The organizers wanted to collect samples from groups of people that they call isolates of historical interest. They assume that these groups were isolated from society, and that their DNA was pure. They believed that these populations were only reproducing with people from their own groups, since the beginning of time.
They thought indigenous people fit this definition, and that by studying their genomes, they could answer questions about human origins and evolution. And, by the way, they had to do it fast, because these populations might either go extinct, or start intermingling with society because of globalization.
Lisa: Wait. Start intermingling? So, these ostensibly brilliant geneticists believe that indigenous groups were only starting to intermingle recently? That this is a totally modern phenomenon that didn’t happen in the past?
Rigo: Yeah, those were the, kind of, assumptions they were making.
Lisa: Wow. So that, by that logic, these isolates were not mixing with the world at large, and therefore, they must be biologically closer to our early human ancestors.
Rigo: They were thinking of populations as people on islands. Let’s take Papua New Guinea for example, they are, to a degree, physically isolated from society by the ocean. The difference in the genes of people from the island, versus those living in, say, Philadelphia, which has people from all over the world, are what makes people from Papua New Guinea similar to each other, a population.
Lisa: And so, that is the assumption that the Diversity Project is based on? Like, not realizing that people from Papua New Guinea have boats?
Rigo: Exactly.
Lisa: I noticed you’ve been using air quotes when you say “populations”, tell me about that, Rigo.
Rigo: Luca was a population geneticist, and population genetics is a field that has its critics. It included Angela Saini, the author of Superior: The Return of Race Science.
We know that there were no discreet human populations. There were no sub-breeds or subspecies or anything like that. We are one human species, and although we show individual difference, the group difference is very, very minor, and very statistical. But, efforts to, kind of, group people according to statistical similarity.
So, something that a group of people may have, statistically, in common. So, not every person within that group will share that gene or that trait, but grouping that population to suggest that they have enough in common to make them distinct, is something that Lisa Gannett calls, “statistical racism”.
And this was, essentially, arguably what the Human Genome Diversity Project was about. It was about picking out isolated, different, populations. Or, populations that were assumed to be genetically unique or special in some way, or distinct in some way, from other populations. To identify them, and see what made them different.
Rigo: Initially, the Diversity Project was promoted as a way to unify the world.
Jenny Reardon: This is a time when the Cold War had just ended, and everyone was celebrating, you know, we’re gonna be one world without borders. And the Diversity Project just picked up on that redirect.
Rigo: Luca believed that the Diversity Project could help hammer the final nail in the coffin of the concept of race. And remember, Luca is known as an anti-racist, and he brought other socially conscious scientists onto the project, like Mary-Claire King. She help find the grandsons of Abuelas de Plaza Mayo, who had been killed during Argentina’s dirty war.
And then Hank Greely was added to the team. He was a law professor at Stanford who was brought on to address ethical questions.
Greely: I was asked to be on the planning committee of it, because they wanted somebody from the law school, I’m a law professor. And I was the only law professor who could spell DNA.
The scientists involved in this project, by and large, were, politically, quite to the left [laughs]. I felt sometimes like a conservative. I’m no- I’m, sort of, a centrist democrat.
Rigo: With all their prestige, and socially conscious track record, it seemed like this project was going to be a success.
Lisa: It’s optimistic, you know, well-meaning liberals are gonna be in charge. What could possibly go wrong?
Rigo: Yeah, that’s what they thought, but there were issues from the beginning.
For one, there was concern that these avowed anti-racists were actually practicing race-science. But, instead of saying the word ‘race’, they use ‘population’, and instead of saying ‘racial difference’, they just call it human variation.
Angela Saini: It may feel different from the scientific racism of the n- say, the nineteenth century or early 20th century, but, is it really that different? I’m not entirely [laughs] I’m not entirely sure that it is. So much so that, sometimes, it can feel, when you’re talking to population geneticists, and I’ve had this feeling myself, that you’re being gaslit.
That, they’re saying that what they’re doing isn’t race science, but it has so many of the hallmarks of [laughs] of race science.
Then you have to ask yourself then, what exactly is the aim of this? What are you really trying to prove? And why are you trying to prove it? And I’m not entire sure that there’s been enough introspection in that field, to really interrogate why do we group humans in the first place? Why do we bother doing that?
Lisa: I really take her point. I think the argument of the Diversity Project is, we wanna prove that we are all the same, but, at the same time, they’re claiming that people in Papua New Guinea, or Northern Montana, or, or wherever, they’re different from everyone else, because they’re isolated from the world, and interbred.
Rigo: And this is a paradox that they were never really able to explain.
Greely: It’s a funny, kind of, thing to say, we’re going to prove we’re all the same, by looking to where we’re different. I don’t think we ever were able to come up with a good, clear why to express why looking at differences actually showed unity.
Rigo: Some of the first people to criticize the project were anthropologists. They thought Luca and his team were relying on old racial tropes. One anthropologist called it, “21st century technology applied to 19th century biology”. Michael Blakey, a bio anthropologist, called out Luca during a conference in 1992.
Michael Blakey: It was patently racist, but, you know, I was still fairly junior, and, uh, no one else said anything. And I came to the microphone from the audience, and I said, “Except, for example, he wanted to find tribes that were, you know, isolated populations,” and he said, “Well, in Africa we found 1,600 tribes, and in Asia 600 tribes, but in Europe, no tribes.”.
If you use comparable language, for example, the term ‘ethnic group’ or ‘national groups’, you will find many of them in Europe. So, he was not capable of, as it ultimately turned out, to seeing Blacks as equivalent or Asians as equivalent to whites.
My colleague, Jimima Pierre, at UCLA, has written some interesting work on how the term ‘tribe’ came to replace the term ‘race’. So, it’s thinly veiled, kind of, racism.
Rigo: So, this is the kind of language that anthropologists had long abandoned, and here, the Diversity Project was reviving them.
Jenny Reardon: And certainly, this idea of isolates as historical interest was seen as… well, first of all dehumanizing indigenous peoples, you know, turning them into entities that existed only in the past, then, did not recognize their present humanity, and that doesn’t seem like the act of someone who’s an anti-racist.
Rigo: Luca claimed that his project was going to put the final nail in the coffin of race, but Jenny Reardon says that there’s a caveat.
Jenny Reardon: The thing that I think many people don’t understand is that, what Luca Cavalli-Sforza was really saying is that, I want a nail in the coffin of the social, the constructed notion of race, not in the biologically accurate conception of race that I use.
Rigo: Luca wanted to get rid of racism, or of any hierarchy between races, not the biological idea of race itself.
Lisa: Ah, that’s a classic. Oh, race is real, but racism is wrong, and we should get rid of it.
When the truth really is that, racism, as a social construct, is very real, and race, biologically speaking, is not real.
Rigo: In the end, the Diversity Project managed to get anthropologists to help. Their concerns aren’t a deal breaker. And the project moves on, but it does leave some unanswered questions.
Chapter 2: The Hit List.
Rigo: In 1992 Diversity Project scientists gathered at Penn State University to make a list. On that list, there were hundreds of population groups that they wanted to study. The list included mostly indigenous tribes, so called isolates of historical interest. The Rural Advancement International, or RAFI for short, is an advocacy group that was concerned about how the field of genetics could cause harm. This is why they were keeping an eye on the Diversity Project.
And when they saw that term, ‘isolates of historical interest’ they immediately jumped on it.
Greely: I think that got written up in science or nature, in a news story, and as soon as they saw that, I said, “Jesus Christ, hand a slogan to RAFI on a platter.” And that’s what happened.
Rigo: In May 1993, RAFI accused the project of “threatening the livelihood and autonomy of indigenous groups”. Later that month, they got a hold of the list, and they dubbed it “the hit list”.
Jenny Reardon: And RAFI international, Rural Advancement Foundation International, had connections to the indigenous rights groups, and gave them this document. And you can imagine that indigenous groups were none to pleased to find out there were a bunch of scientists, sitting in a university in Pennsylvania, dreaming up, you know, which indigenous groups they were going to sample, without ever talking to any indigenous group prior to coming up with the list.
Rigo: In 1993, an indigenous group called the Third World Network, wrote a proclamation claiming that the Diversity Project was violating indigenous people’s human rights.
That summer RAFI and indigenous groups started to worry even more. RAFI had been fighting against big companies patenting the DNA from crops, like corn and rice.
Lisa: Ah, okay. I can, sort of, see where this is going. They were worried that scientists from the Diversity Project couldn’t be trusted with any human DNA they collected, right?
So, like, RAFI was assuming that it wasn’t a huge leap to go from patenting vegetable to patenting human DNA.
Rigo: Exactly. They discovered that U.S. government scientists had patented the cell lines of a Guaymi indigenous woman from Panama, because they believe the group had a genetic predisposition to fight off viruses.
Lisa: Did they tell this woman that her DNA was getting patented?
Rigo: No. And as far as she knew, she was just getting her blood drawn.
So, with this information, Debra and her allies were concerned about how the Diversity Project might use indigenous people’s DNA. After all, the Guaymi people were on the hit list.
Debra Harry: We saw this as an extension of the Colonial Project, which these too, kind of, extract and can modify everything, including the cells from our bodies.
Rigo: And, to be fair, Diversity Project organizers had nothing to do with the Guyami patent, and were very vocal about their opposition to patenting in general. But, they got grouped into this controversy, and Hank Greely says that this was unfair.
Greely: I did not become fond of RAFI, or f- frankly Debra Harry, but they did a brilliant job of public relations and communication, and we didn’t.
Lisa: So, just to be clear for anyone listening, the Diversity Project was not trying to patent any DNA they collected. But, from my perspective, how could indigenous groups trust them? Other people had, kind of, ruined it, and broken that trust.
Rigo: Yeah, I think that’s right. And Diversity|Project scientists were adamantly against it, but no matter how many times they said they weren’t going to patent any cell lines, it really didn’t make a difference. And, like Hank Greely said, they didn’t do a great job at communicating this. And this was a pattern that they saw again and again. Greely saw this first hand in 1993. That December, he went to the World Council of Indigenous Peoples, in Quetzaltenango, Guatemala, to present the Diversity Project to indigenous groups.
He went in place of someone else who had a change of plans, and that organizer was fluent in Spanish, and had worked with Mayan communities before. Greely was neither of those things.
Greely: I’d also then end up flying into Guatemala City via San Salvador, and renting a car, and driving up to Pan-American Highway, to get to Tenango. When I think Pan-American Highway, I think of a highway. It’s a two-lane road, not always [laughs] in good condition, in a country that I don’t know, with a language that I don’t know. “Yo solo hablo restaurante espanol.” So, it’s a Spanish-speaking group, that, I don’t speak Spanish, and I barely understand Spanish.
And not all that many of them spoke English, and maybe some of them speak English, didn’t want to. So, I’m gonna be by myself, I’m new to the project, and I don’t speak Spanish. I’m not a happy camper. And then, I ended up getting accused of being a CIA agent, but if I had said what I said in Spanish, for example, I think it would’ve seemed less colonialistic and imperialistic, right?
But, right. I wasn’t gonna convince anybody.
Rigo: That same month, the World Council of Indigenous People dubbed the project, the Vampire Project.
Lisa: Whoo, now that’s branding.
Rigo: And this is when Debra first learned about the project.
Debra Harry: You know, this really was looking like helicopter science. It was, uh, you know, go in, get the DNA, and get out. And take it off to your laboratories in, you know, Stanford or France or wherever these, uh, genetic samples are going.
Rigo: Judy learned about it from Debra, when she went to Nevada.
Judy Gobert: And the way that they were selling it to tribes, and it was really, it was really disgusting. It was so exploitive. They treated all of the indigenous people as if they were really stupid, and that they couldn’t understand the science. No way.
Lisa: I wanna remind everyone, Judy Goldberg is a scientist with two PhDs.
Rigo: After learning about the project, Judy and Debra become, sort of, a dynamic duo. And their goal was to get the word out, and unite against the Human Genome Diversity Project.
Lisa: It’s really ironic. Luca Cavalli-Sforza and his team made this assumption that indigenous groups were isolated from the world, and also isolated from one another. But here, you see this connection. Debra was in Nevada, Judy was in Montana, but they found each other. They were all clearly plugged in to these cross-country networks.
Rigo: And this was happening during a time when indigenous groups were successfully organizing on a mass scale. Just the year before, in 1992, indigenous groups around the world, protested the 500 anniversary of Columbus’ arrival in the Americas.
It really galvanized Native American groups, because they got so many people together, and they wanted to keep that energy going.
News clip: Native Americans say they plan to demonstrate this time every year until their voices are heard. At the same time, they add that, with the year 1492 etched in our memories, they face an uphill battle.
Rigo: Okay. So, maybe you’re wondering, what enabled them to organize so well, on such a mass scale?
Lisa: Well, if this is all taking place in the early ’90s, I’m guessing something called the internet [laughs] had a hand in it.
Judy Gobert: I was telling my son, he’s a scientist too, and he has a podcast he did with me. An interview he did with me and, uh, he asked me this very same question [laughs] and, and I said, “Well, do you remember list serfs?” [laughs]. And he, [laughs], and he said, “We still use them.” I said, “That was it.” I said, “We were, for the first time, we didn’t have to fax ten cajillion sheets of something, you know, to our colleagues down in South America, to get the information to them. Some, in a hopefully, that the fax machine was turned on at that time, at that day,” you know.
Rigo: But Judy didn’t just rely on the internet. She also organized in person. When she learned that the Diversity Project was coming to her region, she went to different tribal leaders in Montana and Wyoming, and told them about it.
Judy Gobert: All these old, these cowboy guys, they were all mad. Th- and these guys, they’re smart, man. These are whip smart, you know, and I, I didn’t have to say very much, and they were, like… they realized that, that people were trying to exploit them again. But it was their very DNA that they’re trying to exploit.
I just love being around those guys, because, me, I’m, like, you know, off the wall, off the charts, you know. I’m just mad, ready to fight. Those guys sit there and they, they tip their heads back, and they, they, kinda, look over at each other and they nod, you know. And then, once in a while somebody will put a hand on their table, and tap with a finger.
But they, the, you know, there’s none of my histrionics [laughs]. And then, they just make a decision, and it’s just so elegant. All you have to do is just present the information, and then give them, like, 10 minutes to do their look around the room thing. Once in a while, one of them will read it again, and put the paper down, and then grunt [laughs]. And you, like, [laughs] you know what they’re thinking.
Rigo: They were especially angry about the words ‘isolates of historical interest’.
Judy Gobert: And when they responded to that part, the responses was pretty vicious. It was a useful tool when we were able to say, this is not our words, but this is what the scientists are calling you [laughs].
Rigo: In the fall of 1994, Judy learned that Diversity Project scientists were have a meeting in St. Paul, Minnesota. No indigenous people were invited, so Judy and Debra put a call-out for tribal leaders to go.
Judy Gobert: So, we found out, at the last minute we put the call out, and we got, like, 10 tribal leaders to go. And these guys all wear cowboy hats and now wear boots, you know, they’re all ranchers, farmers. And they go walking in, and it was, like, you should’ve seen those scientists, it was just, yeah.
And when they got up and they talk to them, they let them know for the Piikani people, for instance, they let them know that, there was 27,000 tribal members, and we were not an historical isolate. And so, they really ripped them up good, you know. Their whole premise of their study… and all of those tribes were on there. Every single tribe in Montana was on there.
And we’re not disappeared. Nobody’s disappearing. As a matter of fact, they are experiencing historic growth. And it’s mostly young people. It’s a young population.
I think it was just their whole premise, you know, their whole scientific premise was just to get DNA. And then, when we talked to… we put the word out to some activists we know down south, you know, in Mexico, and then, in South America, because there’s a lot of South American tribes on that list too.
They were, like, puzzled too, why are they saying isolates of historic interest? We’re not disappearing, you know. And then we got down to it, it was just a way of them presenting the science to other scientists, to try to get funding, to say that, these people are disappearing. We gotta get in there, and get it now.
There was an urgency behind this.
Lisa: I guess I understand why funding might come more freely if you say, oh these people are disappearing, or, they’re starting to mix with society and we’re losing their pure DNA. But, I also understand the outrage that generated.
Imagine being looked in the face and told, you’re disappearing, and it’s important that we take your blood now! [laughs]. It’s dehumanizing.
Rigo: Judy and Debra were upset, because Diversity Project organizers never bothered to consult with indigenous groups first. They had to learn about it from a leaked list that was passed through indigenous list serfs.
Debra Harry: Luca Cavalli-Sforza once said, in a magazine interview, he said, “We’re scientists, we’re not social scientists. We didn’t anticipate the feelings or the thoughts of indigenous peoples when we started this project.” So, clearly it was an outside-in, top-down kind of affair, and indigenous peoples were expected to just, you know, serve as pin cushions for their needles, rather than have any involvement in it, nor any, kind of, potential outcome that would benefit indigenous peoples.
And doesn’t that violate, like, basic human [laughs] you, you know, ethics in human subjects research?
Rigo: Luca and his team were caught off guard by all the opposition.
Lisa: I understand that, but I also think it’s a little naïve not to think about the perspective of the people that you want to study. I mean, they’ve been through things like this before. They’re gonna be skeptical.
Greely: So, I’m tempted to retreat to the passive voice, and say, mistakes were made [laughs]. We made mistakes, but, I think some of the people involved early on, were really surprised that this was controversial or difficult, because, of course, like people everywhere, they knew what they were doing was right, they knew they were good people.
Lisa: I feel like, when I read science history, I often see these kinds of mistakes being made, with this belief that science is somehow outside of society, or beyond it, or past it, or far more evolved that our petty social concerns.
But, like we always say here, science is a human endeavor, so all of humanity’s biases and problems get caught up in it too.
Greely: I think sometimes having that self-image, and an accurate self-image, could blind you to how others might see you. Not see you as a socially conscious scientist, but see you as an arm of the exploitative capitalist colonialist hegemony. Which, Luca and Mary-Claire and all the others would’ve, were when they heard those claims, were appalled by, but if they’d gone into it with a little more understanding, I think, of the politics and the culture.
I didn’t know much, but when I got involved, I knew a little bit more, and one of the, the views I had was, if you were a Native American group who wasn’t cynical, skeptical and paranoid about the government, about outside control, you were gone [laughs].
Lisa: I guess, if there’s any lesson here, it’s, you know, for researchers, listen more. Collaborate. Don’t think of people as subjects. But, yeah. Lessons were learned.
Chapter Three: Scientifically Unsophisticated.
Lisa: Okay. So, you have these indigenous scientists and leaders organized, and mad. So, what happens next?
Rigo: Well, as you can guess, it starts to fall apart. In 1994, Luca and his colleagues made their case to UNESCO, and agency of the United Nations. And they wanted the Diversity Project to named as the premier human genetic Research Project of the World.
Many native organizers spoke against their project there too, and, in the end, UNESCO decided against supporting it.
From Luca and his colleagues’ point of view, it was clear that something had to change. And so, the Diversity Project got money from a foundation to do outreach with indigenous groups. And, it was around this time that Hank Greely developed an ethics protocol, which was actually kind of groundbreaking.
The document really created a thought of informed consent, in a unique way.
Lisa: Let’s break down ‘informed consent’ for the listeners.
Rigo: Do you wanna take a stab at it?
Lisa: I would love to. I consent to [laughs].
So, the way that informed consent usually works, is that a researcher is supposed to fully inform their subject of exactly what the study is about, then tell them exactly how the sample will be used. And it’s important to give the person enough time to ask questions, and give it a lot of thought.
Basically, you need to give your subject a real chance to say no.
Rigo: Thank you for that. And, like you were explaining, the emphasis really is on the individual’s ability to consent. But, the Diversity Project was innovative in that, it sought the consent of the group.
Greely: We said, if you want to take samples from a member of the Navajo Nation, you had to get consent from that individual, but you also had to get consent from the nation.
Rigo: So, and Greely’s really proud of this document, but, what indigenous groups took away from it was the words that it used to describe them, as scientifically unsophisticated.
Lisa: Oh, no! Oh! One step forward, two steps back.
Debra Harry: A lot of those ethical standards go out the window when they’re meeting with indigenous peoples. And, you know, that’s where you start to see all these terms, like ‘scientifically unsophisticated’. They will never really understand this field of science, because, you know, they don’t have the intellectual capacity to do so.
Well, if that’s the case, they could never give informed consent. And, you think about who is getting that informed consent. How much information are they really giving folks, right? How much are they telling them, to secure that informed consent?
Again, I’m back at the fox in the chicken coop, kind of, situation here. But, for indigenous peoples, if they knew the full scope of what is done with their genetic material, they would say no. And what it’s being used for, they would say no. But, we’re dependent on the researcher to make sure the indigenous peoples have that information.
Lisa: And that’s the heart of informed consent, having all the information to make your decision.
Rigo: She’s kinda right to be skeptical. At around this time, there was another genetic project involving Native Americans, going on in Arizona. The Havasupai Tribe was trying to find out why they had such high levels of diabetes. So, they partnered with geneticists at the University of Arizona to study their DNA.
Lisa: I’m hoping that the word ‘partnered’ here means that there was a better outcome to this research?
Rigo: Well, not really. So, years later, some of the participants of that study learned that scientists had kept their DNA, and were using it for other, unrelated, studies. The Havasupai Tribe never gave consent for their DNA to be used this way, and they weren’t even informed after the fact. They learned about it after they saw some data at an academic presentation.
Lisa: Oh, boy. So, a clear violation of informed consent principles.
Rigo: So, just to be clear, the Diversity Project had nothing to do with this either. But, it does show why it was so hard to build trust with indigenous groups.
When their plans started getting pushback, the project tried to pivot to get buy-in from native communities.
Judy Gobert: They would say, we could maybe find a, you know, a cure for diabetes, you know. We may be, you know, we could find a cure for this, or a cure for cancer, or, you know, if we could study your DNA… and so, of course, indigenous people are generous people. You know, they will give you the, the shirt off their back, and their last bowl of soup, you know, if you’re a guest, and they try to help you out.
And so, of course, they’re gonna do that, if it’s gonna help all of their people.
Rigo: The Diversity Project was trying to re-right itself, playing out possible health benefits.
Debra Harry: They often changed their tune, based on what kind of criticism they were receiving. For instance, they said, “Wow, there could be great medical benefit from our research.”. Whereas, initially, it was just purely about human history, and that we may find the genetic basis for cures for medical conditions.
That was interesting because, obviously, you wouldn’t study indigenous peoples for, you know, medical research. You study individuals and family lineages for that. It has nothing to do with indigeneity, and the project would be structured differently.
Rigo: Eventually, scientists realized that, selling the project based on health benefits moved beyond the scope of the project.
Lisa: I’m sympathetic. I mean, this project did have really good aims at the outset, but it feels like the organizers refuse to see their own project from anyone else’s perspective, or through any other
eyes.
Rigo: And they continued to defend the project. Here’s Jenny Reardon again.
Jenny Reardon: I mean, Luca Cavalli-Sforza particular, they didn’t understand why everyone was so upset, they continued to try to push the project forward, even in the wake of the, these critiques. And there was one very notable, you know, moment, a meeting that I actually went to, up in Montreal, Canada, which was the first international meeting on human DNA sampling.
And famously, Luca Cavalli-Sforza had a bodyguard there, because there was concerns that things would get ugly. So, things were very tense.
Indigenous rights organizations argued that they should’ve been allowed to attend that meeting for free. These types of meetings require registration fees. Often academic meetings do, and they can cost a lot of money, like, several hundred dollars, and indigenous rights groups said, look, we, we’re being barred from this, you should just let us in.
And so, they protested at that meeting, and it was a very tense moment.
Lisa: It’s, kind of, an interesting reversal at work, right? Geneticists with the Human Genome Diversity Project, assumed they could enter into the indigenous world without any problem, but they were surprised when indigenous people tried to enter their world.
Rigo: Yeah, I think that’s fair, but, Hank Greely pushed back on the characterizations of Luca. He says that the bodyguard was provided by the event organizers, not the Diversity Project.
Greely: And Luca didn’t say no, but knowing Luca, it might’ve been he didn’t say no because he thought having a bodyguard was a good idea. Might’ve been he didn’t say no because he thought it was funny. And it might’ve been, he didn’t say no because it would be impolite.
Rigo: All this conflict aside, Luca still wasn’t ready to give up.
Lisa: Chapter Four: The Beginning of the End.
Okay. So, things are clearly falling apart and breaking down, but were the indigenous organizers and the Diversity Project organizers able to, at least, come to the table together?
Rigo: Yeah, they literally got in a room together, and the Diversity Project brokered this meeting, at Stanford, in 1998.
At that point, they still had high hopes, but this is how Judy remembers feeling.
Judy Gobert: I felt like they wanted to give us all a cupcake and wanted us all to just, you know, listen to them, and nod our heads at the appropriate times, and not say anything.
They didn’t have a, any kind of respect, one, for our cultural ways, two, for us, as women. Deb and I were both treated pretty shabbily by Luca.
Rigo: Judy and Debra felt like Luca was a polite man, but condescending.
Judy Gobert: I felt like he always wanted to pat me on the head. You know, there’s just, like, men that you get around, it, and I say that deliberately, because I use that as a tactic, as in, in, as a tool.
Rigo: She picked up this tactic when she worked for a tribal college years ago.
Judy Gobert: So, I was working with a lot of white men, who had very advanced degrees, and who looked at me as, like, a, this poor, pitiful, little woman, you know. I felt like I was hitting my head against brick walls.
So, I was talking to my uncle about it, and I said, “These guys, it feels like they just wanna pat me on the head, and, and, like, help me change my tire.” And [laughs] he laughed, and [laughs] he said, “Well, use that.” And I said, “Oh,” he said, “Be helpless.” He said, “We all know you’re not helpless. We all know that you are a brainiac. But these guys don’t know you, and” he said, “… they have no respect for, number one, for Indian women, and no respect for your intelligence and your degrees and all of the, you know, your resume. They don’t, they, they really could care less, and they’re ticking off a box.” He said. “So, pretend to be helpless. And make them work for you.”.
But, that’s what I felt Luca wanted to do, was to pat me on the head, you know, like, he felt sorry for me, and like, he felt like I just didn’t get it. I just didn’t get how smart he was, I didn’t get how important this project was to him, how important this was to the world. And also, who cares if indigenous people are not gonna get anything from this?
Rigo: And, to be fair to Luca, people who knew him, knew that he was a well-meaning guy.
Jenny Reardon: I think it’s something that sometimes is overlooked about Luca, or he, he gets, you know, critiqued, and, you know, has this, sort of, the racist patriarch of the Diversity Project. But, but that, that is too much of a, a reductionist approach. Luca was a very complicated person, who also was someone who cared deeply about people.
Lisa: It seems like he entered into this project with a lot of optimism, but also, a lot of assumptions. And the communication piece was really missing.
Rigo: Yeah. It was clear that, from this point forward, things were not going to be resolved by just explaining things.
Greely: It certainly, to the extent some of my colleagues on the project, thought that, all they had to do was, be clear, and explain themselves, and everybody would join hands and sing Kumbaya, and be happy for this wonderful advance. I think that opened some eyes.
Jenny Reardon: many of those leaders, indigenous tribes leaders, did feel like it was condescending to say, oh, you just misunderstand. Because, from their point of view, well, you’re not understanding what we’re telling you.
This lack of understanding goes two ways. You scientists don’t seem very open to understanding what we’re trying to tell you, which is, your project is not a universal good. It may actually do harm to our communities.
Rigo: The fear around patenting and the general condescension were two strikes against the Diversity Project, and I want to add a third one.
At around this time, some geneticist were studying something called “The Warrior Gene.”
Lisa: Ah, the warrior gene. A bit of bad science. A belief that certain populations are more likely to have genes that make them more prone to violence. And you can, sort of, see the problem here. How can people trust scientists to take their DNA, and then use it in research that might argue that they’re more violent, more addicted to alcohol, uh, whatever terrible stereotypes are already circulating?
The fact that it was “genetic” would make it their problem, and not a societal problem or [laughs] you know, a lie.
Rigo: Exactly. And we want to make it clear, the warrior gene is scientifically sketchy, but it doesn’t take very much for people to want to believe that it is true.
And by the time that the science is cleared up, it could take decades. And that’s decades of being associated with a negative assumption. So, I know I said there were three pitfalls, but there was actually a fourth, really big, one.
Remember when I said that the goal of the Diversity Project was to identify a common human ancestor? Well, proving all humans come from the same place, could cause problems for indigenous sovereignty.
Judy Gobert: In Oklahoma, there was a politician, and I s- I still even have the article, who said that, why did we have to honor any of the treaties that we’d made with the tribes, because this new study that was coming out was proving that, we came over the Bering Strait, and that we were just immigrants too?
So, we didn’t have any, more or less, title to the land, the resources than anyone a- who came after us.
Lisa: Wow. So, politicians are actually posing challenges to native sovereignty based on what? The fact that people might have walked in through Alaska tens of thousands of years ago [laughs]?
Rigo: And it raises a very important point, this is not the scientific inquiry Native Americans are even interested in.
Judy Gobert: We know who we are. We know where we come from. We know who we’re related to. We know where our traditional lands are. We know where we originated from. We know where we moved to. We know all of our histories, you know. We know all of that.
So, that’s what they’re trying to prove. We know all of that. So, we don’t have any need for that science.
Rigo: And I think this raises the question of, whose expertise and what kind of evidence to we value?
Debra Harry: I guess the western scientists might like to call that myth or folklore, but you have to remember that, you know, the western world has only been in our lands for the last, what, 550 years or so, give or take a few.
We have in, just here, in my region, you know, we have petroglyphs dated at 15,000 years old. And we’ve been here since the beginning of time, and our stories tell us that. And so, you have westerners who come, 500 years ago, and want to, you know, tell us who we are, and where we came from? It, it’s, it’s ridiculous.
They wanna have access to our ancient ancestors so that they can study their genetics? They have no claim over those bodies. They have no right to even assert a claim over those bodies. But yet, those are the kinds of issues we have to deal with every day.
I think you have to keep it in context, you know, we’re dealing with colonial society that wants to just continue to take and to control, and to dominate, without having such a right to do so.
They were imposing their agenda on indigenous peoples. We weren’t asking these questions, and especially we were not asking these questions and inviting a geneticist to come in and take biological samples, or to compare our contemporary samples with that of the remains of our ancestors.
Rigo: Judy says that, if scientists actually cared about indigenous people, maybe that money could be spent another way.
Judy Gobert: When you ask Luca, what is the purpose, how is it gonna benefit humanity? How is it gonna benefit these people? And I’m talking, like, concrete terms. I mean, let’s not do this fuzzy-wuzzy, you know, us not talk about patriotism, and racism and all of those isms, you know, and this, these abstract terms.
Let’s get, you know, down on the ground and, and down dirty. How’s this gonna help that Navajo grandma whose living on $600 a month, and trying to raise 12 kids, and doesn’t have any water?
Rigo: Judy did set up one last meeting with that Diversity Project in 1998, on the Flathead Indian Reservation in Montana.
Judy Gobert: We invited the Human Genome Diversity Project, and we didn’t get a very big response.
Rigo: So. I was reading that it, it, it was because they took issue with the words colonialism and bio piracy.
Judy Gobert: Good, [laughs]. Yeah, and then we named the whole organization after them [laughs]. Yeah, their words were offensive, and so, we had our own words for, for what they were really saying. So, we used their English words.
Rigo: And, by this point, the trust was completely broken. And the project was, effectively, in the gutter. The National Science Foundation, which had provided some of the early funding, declined to support it further.
Greely: Oh, they won. They certainly A, won the public relations side of it. B, they strengthened their own movement. C, they weakened the HGDP. The HGDP fizzled out.
I think the indigenous opposition was one factor that led to its lack of success. My own view is, it’s not the most important factor, but it was a factor. And so, couldn’t get funding. NIH didn’t wanna fund it.
A lot of
Jenny Reardon: people were scarred by the Diversity Project debates. Project officers at NIH still remember this moment. They were being accused of being… you know, lots of people were being accused of being racist. Scientists, who conceived in themselves as anti-racist, were being accused as racist. It was a traumatic moment in the history of this field, and this endeavor.
And so, no one wanted to be, like, the Diversity Project. And, and the project ultimately did not move forward as, as originally planned. No one went around the world, and collected [laughs] blood from indigenous people. So, it’s just, so everyone’s clear, that just didn’t happen.
Rigo: The samples that geneticists did gather, which was mostly people in Asia, were stored in France, with support of a genetic institute there. But, the once lofty goals of the project was forgotten. Luca died in 2018, and he defended the project up until the end.
Here’s a clip of him discussing that, in 2016.
Luca Cavalli Sforza: I’m glad that I showed enough tenacity, because it was worth it. Uh, the project, uh, uh, encountered the opposition of some anthropologists, uh, the, it had the opposition of some American Indian activists. Not all, in fact on- just a few. But, very vocal. Make it more difficult to study genetics of American Indians.
Rigo: Greenly says that diversity scientists did learn a valuable lesson.
Greely: And I think one thing that the HGDP did was, educate a lot of the people involved in the HGDP about those kinds of issues, and I think it did rub off on NIH and other scientists. I think, in general, a lot of science has been more respectful of indigenous concerns. Is it perfect? No. Will it ever be perfect? No.
But, in a way, we were, unfortunately for us, the, sort of, lighting rod that showed that lighting was a danger [laughs].
Rigo: Diversity Project scientists wanted to figure out where our early human ancestors came from, but the only tool they were ready to use was genetics.
Jenny Reardon: But what they discover is that, their efforts to order nature, required them, necessarily required them, to answer questions about how society is ordered. And in so doing, they end up participating in producing social order. So, they are in effect deciding, like, through group consent, you know, well how are human beings ordered in society? And, who gets to speak for DNA? Who has rights over this important new thing, DNA? And they just think of themselves as, oh, we’re, we’re apolitical. We just are doing science.
And when scientists say, we are just scientists, they are, in effect, acting irresponsibly. Meaning that, they are unable to respond. If you think about response-ability. They have no ability to respond to the consequential social issues that their science raises.
Lisa: So, here’s what I’m thinking, just because the Diversity Project failed in its goals, it doesn’t mean that non-indigenous scientists can never do science with indigenous groups, right?
But, it has to be a collaboration with indigenous groups, and indigenous scientists. They need to be leaders in the work.
Rigo: Yeah, and when I talked to Judy, she told me about a very different experience she had with outsider scientists.
In 1996, she brought some NASA engineers to the Blackfeet Indian Reservation. NASA had gone there to build the windmill that pay for their college’s electricity for 10 years, but this time, she wanted them to talk to the elders.
Judy Gobert: So, we had this dinner with the elders, and visiting and then, so the, one of them, he, kind of, looks down the row of elders, he says, “Okay, NASA, you have things that you want to know, and things that you’re trying to do, and we think we can help you. What are you trying to do?”
The NASA scientists, kinda, their eyes got big, and they all looked at each other. The NASA scientists were so different than, like, Luca and those guys. Because, the NASA scientists were there to listen and to absorb and learn everything they could.
You know, they came there as students, you know. And so, it was a different, totally different atmosphere. And the, the elders picked up on it immediately. I was just like this little kid in the corner, just, like, absorbing it all [laughs] you know, just all excited.
And they said, “We want to talk about space travel.” Uh, and, they said, “We can do that.” And, um, they wanted to do dream travel. And we could, we could tell you about that. We had two meals together. They fed them again, you know, later on that evening.
And, and then, some of those, uh, NASA folks come back, almost every year, to visit with the elders. So, I don’t know what kind of science they’re talking about, or… but how, that was probably, in my whole career, that was the pinnacle for me.
Lisa: That’s a beautiful story. There really are ways to work together.
Rigo: Yeah, starting with the questions that matter to everyone involved.
Judy Gobert: I have what my ancestors have told me, you know? And, that’s what I believe, because also, the other thing, the curious thing that happens, is that, oh my gosh, we should’ve listened to those Indians. They told us from the beginning.
Lisa: Innate: How science invented the myth of race is made possible in part by a major grant from the National Endowment for the Humanities, democracy demands wisdom. This episode was reported and produced by Rigoberto Hernandez, with additional production and editing by Mariel Carr and Padmini Ragunath. It was mixed by Jonathan Pfeffer, who also composed our innate D Music for distillations.
I’m Lisa Barry Drago. Thanks for listening
