The small fishing settlement of Puerto Edén is located on Wellington Island, among a labyrinth of islets and fjords, at least a day's journey from the nearest city. Generations of scientists have made the trip despite the distances and cold. Descendants of nomadic seafarers live in Puerto Edén. Their culture, territory, remains of their ancestors, and dying language have all drawn interest from the academic community.
The goals of researchers and the community have at times been at odds. She says that several scientists arrived in a conquerorlike way and used them for their own goals.
The new constitution of the country will be put to a vote in September and the Indigenous peoples hope to see their rights recognized. There are efforts to balance the relationship between Indigenous groups and scientists in the country.
Elisa Loncn is a Mapuche linguist and former president of the constitutional convention. We will not be a barrier to knowledge.
The process of changing the constitution that was enacted during Augusto Pinochet's dictatorship started in 2019. The new constitution would make the country a "plurinational" with at least 11 Indigenous groups, representing more than 2 million people or more than 15% of the population. In theory, they have more sway over their lands than the federal government does in the United States.
The existence of Indigenous knowledge and the protection of Indigenous peoples' identities, cultures, and territories are included in the draft constitution. It gives Indigenous peoples the right to return objects and human remains, and requires the government to develop mechanisms for that.
There is no explicit mention of research with Indigenous communities. It could encourage a more collaborative approach that takes into account local and ancestral knowledge.
Some Indigenous people cite examples of scientific overreach. A lot of communities complain that research is done on them from a Western perspective. In the 1990s, researchers from Chile and Japan took blood from the Mapuche people. A public cell bank has been set up at the RIKEN BioResource Research Center in Tsukuba, Japan. Cell lines derived from the samples are available to scientists around the world, with a tube costing $110. But donors didn't see any benefits.
It is a story that is familiar to many people in the country. The way research is done nowadays is convenient for scientists. There needs to be some sort of resistance.
According to polls, the proposed constitution's initial high popularity has recently waned. Even if it doesn't work, other efforts are still going on. 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 make it seem like Indigenous people have different genetics than other people. They called for the development of protocols for incorporating Indigenous voices in the design of sampling procedures, as well as drafting informed consent forms and interpreting results.
The Ciencia y Comunidades program was launched in late 2021. They held a workshop with members of the Aymara, Diaguita, Chango, Rapa Nui, and Mapuche people. Attendees at the opening and closing ceremonies talked about how research is done, who approves projects, and what genetic data can and cannot say about a person's identity. The Summer internship for Indigenous Peoples in Genomics workshop is an international consortium that explores the ethics of genomics and aims to train Indigenous scientists in the field.
The goal is to give communities the power to demand their rights and to motivate colleagues to work in a different way. To try and generate a dialogue with the communities by saying, 'This is an informed consent form, sign it and give me your sample.'
Some researchers are cautious about dialogue. In Canada, New Zealand, and the US, Indigenous communities have asked geneticists to delay work, change research questions, and not publish results. Luca Cifuentes, a medical geneticist at the University of Santiago, says that one can't take an attitude of "absenceist" attitude. Creative freedom is needed for science.
Verdugo says publishing restrictions would be a form ofcensorship. He thinks there is a need for a new paradigm. He says that Indigenous communities have the right to speak. It is something that requires their opinion, what to ask, why ask, and how I will interpret it.
Now is the time for drastic measures. Other scientists might ask me questions. Macarena is a human population geneticist at the University of Tarapac, Arica. Extreme changes are required for a transition.
The community of Puerto Edén created a protocol for scientific research because they were fed up with one-sided interactions. Scientists need to meet with a council to explain their research, what they will do with it, and how Puerto Edén will benefit. They have to honor taboos against visitingsacred places. They have to give something back, whether it's a simple acknowledgement or a share in any financial rewards. Many hope that the plan will become the norm in the future.
The protocol isn't a rejection of science The community is planning to build a science center and field station. She says that they want to make sure that it's done correctly. Our voices are included from the start.