Chile’s Indigenous peoples seek fairer partnerships with scientists | Science

The small fishing settlement of Puerto Edén is nestled on Wellington Island in southern Chile, among a labyrinth of islets and fjords at least a day’s journey from the nearest city. But the distance and Patagonian cold have not discouraged generations of scientists from making the trip. Puerto Edén is home to some of the Kawésqar, descendants of nomadic seafarers. Their culture, territory, the remains of their ancestors, and their dying language have all drawn academic interest.

But the goals of researchers and the community have sometimes been at odds, says Ayelen Tonko Huenucoy, a Kawésqar physical anthropologist at the Chilean National Museum of Natural History, who partly grew up in Puerto Edén. “Several scientists arrived in a totally conquerorlike way … using us for their [own] goals,” such as demanding genetic information from the community, she says.

Now, the Kawésqar and other Indigenous peoples in Chile hope to see their rights recognized for the first time in the country’s new constitution, which Chileans will vote on in a referendum in September. And other efforts to balance the relationship between Indigenous groups and scientists in Chile are underway, including a collaborative workshop last week on ethics and genomics.

“We will no longer be the guinea pigs,” says Elisa Loncón, a Mapuche linguist at the University of Santiago and former president of the constitutional convention. “And we will not be a hindrance to knowledge either.”

The constitutional process began in 2019, when massive protests against inequality called for replacing the constitution enacted during Augusto Pinochet’s dictatorship in 1980. If approved, the new constitution would make Chile “plurinational,” with at least 11 Indigenous groups, representing more than 2 million people or nearly 13% of the population, recognized as autonomous communities governing their territories. They would in theory have more sway over their lands, than, for example, Native Americans in the United States, where the federal government holds Indigenous land in trust.

The draft constitution recognizes the existence of Indigenous knowledge and protects Indigenous peoples’ identities, cultures, and territories, including nature in its “material and immaterial dimensions.” It also gives Indigenous peoples the right to repatriate objects and human remains, and mandates that the Chilean government develop mechanisms for such repatriation, perhaps including objects from abroad.

The new constitution isn’t explicit about research with Indigenous communities. But it could encourage a more collaborative approach that considers local and ancestral knowledge, says microbiologist Cristina Dorador Ortiz, a member of the constitutional convention that wrote it.

This stance is new in Chile, where some Indigenous people cite past examples of scientific overreach. “Many times, communities complain that research is done on them from a Western perspective,” Dorador Ortiz says. For example, in the 1990s, Chilean and Japanese researchers took blood from Huilliche communities, who are part of the Mapuche people, in southern Chile. Those samples and more than 3500 others from Indigenous groups across South America are now in a public cell bank at the RIKEN BioResource Research Center in Tsukuba, Japan. Cell lines derived from the samples, expected to be useful for studies on human migration or genetic variations in drug response, are available to scientists worldwide, with a tube costing about $110. But donors never saw any benefits, Tonko Huenucoy says.

It’s a story familiar to others in Chile. “The way research is done nowadays is superconvenient” for scientists, says Constanza Silva Gallardo, a biological anthropologist at Pennsylvania State University, University Park, and a member of the Diaguita Mapochogasta Autonomous Community in Santiago. “There needs to be some sort of pushback to bring effective change.”

The proposed constitution could help set the stage, although polls suggest its initial high popularity has recently fallen. But even if it fails, other efforts are ongoing. In March, a mostly Chilean team including Tonko Huenucoy and Silva Gallardo published a paper in Frontiers in Genetics urging geneticists to abandon stigmatizing narratives that magnify any genetic differences between Indigenous people and other Chileans. They also called for Chilean universities to develop protocols to incorporate Indigenous voices in designing sampling procedures, drafting informed consent forms, and interpreting results.

In late 2021, this same group launched a program, Ciencia y Comunidades, to improve ethical standards in genomic studies of Indigenous populations in Chile. Last week, they held a workshop at the Pontifical Catholic University of Chile with members of the Aymara, Diaguita, Colla, Chango, Rapa Nui, and Mapuche (including Huilliche and Pehuenche) peoples. Between opening and closing ceremonies involving traditional dances, attendees discussed how research is done, who approves projects, and what genetic data can and cannot say about a person’s identity. The effort was modeled after the Summer Internship for Indigenous Peoples in Genomics workshop, an international consortium that explores the ethics of genomics and aims to train Indigenous scientists in the field.

The goal is to empower communities to demand their rights and to “motivate colleagues to work in a different way,” says Constanza de la Fuente, a Chilean ancient DNA researcher at the University of Chicago and a member of Ciencia y Comunidades. “To approach the communities not only saying, ‘This is an informed consent form, sign it and give me your sample,’ but trying to generate a dialogue with them.”

Although they acknowledge that dialogue is needed, some Chilean researchers are wary. In other countries, including Canada, New Zealand, and the United States, Indigenous communities have asked geneticists to delay work, change research questions, keep data private, and not publish results. “One can’t take absolutist [attitudes],” such as insisting that scientists must keep all data private, says Lucía Cifuentes, a medical geneticist at the University of Chile (UCh), Santiago. “Science needs creative freedom.”

Publishing restrictions would be “censorship,” says Ricardo Verdugo, a human population geneticist also at UCh Santiago. But he thinks a new paradigm is needed. Indigenous communities are “the first ones that have the right to have a voice,” he says. “What to ask, why ask it, and how I’m going to interpret [and] communicate it, is something that absolutely requires [their] opinion.”

For others, now is the moment for drastic measures. “Other scientists might [question] me. But, for me, ethics comes first,” says Macarena Fuentes, a human population geneticist at the University of Tarapacá, Arica. “For there to be a transition, extreme changes must occur.”

In Puerto Edén, fed up with what they saw as one-sided interactions, the community created a protocol for scientific research within its territory. Scientists must meet with a council to explain their research, what they’ll do with the results, and how Puerto Edén will benefit. They must also respect Kawésqar culture, including honoring taboos against visiting sacred places. And they must give something back, whether a simple acknowledgement, a share in any financial rewards, or co-authorship. The plan may be exceptional in Chile at the moment, but many hope it will become the norm in the future.

The protocol isn’t a rejection of science, Tonko Huenucoy explains. The community even plans to build a science center and field station to attract research to the community. But they want to make sure that it’s done for and with the Kawésqar, she says. So “[our] voices are included from the very beginning.”

The small fishing settlement of Puerto Edén is nestled on Wellington Island in southern Chile, among a labyrinth of islets and fjords at least a day’s journey from the nearest city. But the distance and Patagonian cold have not discouraged generations of scientists from making the trip. Puerto Edén is home to some of the Kawésqar, descendants of nomadic seafarers. Their culture, territory, the remains of their ancestors, and their dying language have all drawn academic interest.

But the goals of researchers and the community have sometimes been at odds, says Ayelen Tonko Huenucoy, a Kawésqar physical anthropologist at the Chilean National Museum of Natural History, who partly grew up in Puerto Edén. “Several scientists arrived in a totally conquerorlike way … using us for their [own] goals,” such as demanding genetic information from the community, she says.

Now, the Kawésqar and other Indigenous peoples in Chile hope to see their rights recognized for the first time in the country’s new constitution, which Chileans will vote on in a referendum in September. And other efforts to balance the relationship between Indigenous groups and scientists in Chile are underway, including a collaborative workshop last week on ethics and genomics.

“We will no longer be the guinea pigs,” says Elisa Loncón, a Mapuche linguist at the University of Santiago and former president of the constitutional convention. “And we will not be a hindrance to knowledge either.”

The constitutional process began in 2019, when massive protests against inequality called for replacing the constitution enacted during Augusto Pinochet’s dictatorship in 1980. If approved, the new constitution would make Chile “plurinational,” with at least 11 Indigenous groups, representing more than 2 million people or nearly 13% of the population, recognized as autonomous communities governing their territories. They would in theory have more sway over their lands, than, for example, Native Americans in the United States, where the federal government holds Indigenous land in trust.

The draft constitution recognizes the existence of Indigenous knowledge and protects Indigenous peoples’ identities, cultures, and territories, including nature in its “material and immaterial dimensions.” It also gives Indigenous peoples the right to repatriate objects and human remains, and mandates that the Chilean government develop mechanisms for such repatriation, perhaps including objects from abroad.

The new constitution isn’t explicit about research with Indigenous communities. But it could encourage a more collaborative approach that considers local and ancestral knowledge, says microbiologist Cristina Dorador Ortiz, a member of the constitutional convention that wrote it.

This stance is new in Chile, where some Indigenous people cite past examples of scientific overreach. “Many times, communities complain that research is done on them from a Western perspective,” Dorador Ortiz says. For example, in the 1990s, Chilean and Japanese researchers took blood from Huilliche communities, who are part of the Mapuche people, in southern Chile. Those samples and more than 3500 others from Indigenous groups across South America are now in a public cell bank at the RIKEN BioResource Research Center in Tsukuba, Japan. Cell lines derived from the samples, expected to be useful for studies on human migration or genetic variations in drug response, are available to scientists worldwide, with a tube costing about $110. But donors never saw any benefits, Tonko Huenucoy says.

It’s a story familiar to others in Chile. “The way research is done nowadays is superconvenient” for scientists, says Constanza Silva Gallardo, a biological anthropologist at Pennsylvania State University, University Park, and a member of the Diaguita Mapochogasta Autonomous Community in Santiago. “There needs to be some sort of pushback to bring effective change.”

The proposed constitution could help set the stage, although polls suggest its initial high popularity has recently fallen. But even if it fails, other efforts are ongoing. In March, a mostly Chilean team including Tonko Huenucoy and Silva Gallardo published a paper in Frontiers in Genetics urging geneticists to abandon stigmatizing narratives that magnify any genetic differences between Indigenous people and other Chileans. They also called for Chilean universities to develop protocols to incorporate Indigenous voices in designing sampling procedures, drafting informed consent forms, and interpreting results.

In late 2021, this same group launched a program, Ciencia y Comunidades, to improve ethical standards in genomic studies of Indigenous populations in Chile. Last week, they held a workshop at the Pontifical Catholic University of Chile with members of the Aymara, Diaguita, Colla, Chango, Rapa Nui, and Mapuche (including Huilliche and Pehuenche) peoples. Between opening and closing ceremonies involving traditional dances, attendees discussed how research is done, who approves projects, and what genetic data can and cannot say about a person’s identity. The effort was modeled after the Summer Internship for Indigenous Peoples in Genomics workshop, an international consortium that explores the ethics of genomics and aims to train Indigenous scientists in the field.

The goal is to empower communities to demand their rights and to “motivate colleagues to work in a different way,” says Constanza de la Fuente, a Chilean ancient DNA researcher at the University of Chicago and a member of Ciencia y Comunidades. “To approach the communities not only saying, ‘This is an informed consent form, sign it and give me your sample,’ but trying to generate a dialogue with them.”

Although they acknowledge that dialogue is needed, some Chilean researchers are wary. In other countries, including Canada, New Zealand, and the United States, Indigenous communities have asked geneticists to delay work, change research questions, keep data private, and not publish results. “One can’t take absolutist [attitudes],” such as insisting that scientists must keep all data private, says Lucía Cifuentes, a medical geneticist at the University of Chile (UCh), Santiago. “Science needs creative freedom.”

Publishing restrictions would be “censorship,” says Ricardo Verdugo, a human population geneticist also at UCh Santiago. But he thinks a new paradigm is needed. Indigenous communities are “the first ones that have the right to have a voice,” he says. “What to ask, why ask it, and how I’m going to interpret [and] communicate it, is something that absolutely requires [their] opinion.”

For others, now is the moment for drastic measures. “Other scientists might [question] me. But, for me, ethics comes first,” says Macarena Fuentes, a human population geneticist at the University of Tarapacá, Arica. “For there to be a transition, extreme changes must occur.”

In Puerto Edén, fed up with what they saw as one-sided interactions, the community created a protocol for scientific research within its territory. Scientists must meet with a council to explain their research, what they’ll do with the results, and how Puerto Edén will benefit. They must also respect Kawésqar culture, including honoring taboos against visiting sacred places. And they must give something back, whether a simple acknowledgement, a share in any financial rewards, or co-authorship. The plan may be exceptional in Chile at the moment, but many hope it will become the norm in the future.

The protocol isn’t a rejection of science, Tonko Huenucoy explains. The community even plans to build a science center and field station to attract research to the community. But they want to make sure that it’s done for and with the Kawésqar, she says. So “[our] voices are included from the very beginning.”