Tensions between Western scientists and Indigenous communities around the world. (“Indigenous” is an internationally inclusive term for the original inhabitants, and their descendants, of regions later colonized by other groups.) Scientists have used Indigenous samples without permission, disregarded their customs around the dead, and resisted returning samples, data, and human remains to those who claim them. Indigenous communities have often responded by severely restricting scientists’ sampling of their bodies and their ancestors, even as genomics has boomed, with increasing relevance for health….
The Indigenous Peoples in Genomics (SING) aims to train Indigenous scientists in genomics so that they can introduce that field’s tools to their communities as well as bring a sorely needed Indigenous perspective to research. Since Malhi helped found it at UI in 2011, SING has trained more than 100 graduates and has expanded to New Zealand and Canada. The program has created a strong community of Indigenous scientists and non-Indigenous allies who are raising the profile of these ethical issues and developing ways to improve a historically fraught relationship…
Some Indigenous communities, such as the Navajo Nation, decline to participate in genetic research at all. And many tribes don’t permit research on their ancestors’ remains. Such opposition can feel like a hostile stumbling block to Western scientists, some of whom have gone to court to gain or maintain access to Indigenous samples. Not being able to study at least some early samples would “result in a world heritage disaster of unprecedented proportions,” the American Association of Physical Anthropologists said in 2007 in a debate over an amendment to the Native American Graves Protection and Repatriation Act.
To understand why so many Indigenous people distrust Western scientists, consider how intertwined science has been with colonialism, says SING co-founder Kim TallBear, an anthropologist at the University of Alberta in Edmonton, Canada, and a member of the Sisseton Wahpeton Oyate in North and South Dakota. “While the U.S. was moving westward, stealing land, and massacring Indians, you had contract grave robbers coming out onto the battlefields and immediately picking up the dead—Native people—and boiling them down to bone, and sending their bones back east,” she says. Many of those skeletons were displayed and studied in museums by researchers who used them to argue for the biological inferiority of Indigenous people. Some of those skeletons are still there. “Science was there, always. It’s part of that power structure,”
Many Indigenous communities see echoes of this painful history reverberating in the 21st century. In 2003, the Havasupai Tribe in Arizona discovered that samples taken for a study on diabetes had been used for research projects they had never consented to, including on population genetics and schizophrenia. They sued Arizona State University in Tempe, which eventually returned the samples and paid $700,000 to the tribe (Science, 30 April 2010)…
Researchers working for the Human Genome Diversity Project (HGDP), a major international effort, were collecting samples from around the world to build a public database of global genetic variation. The project publicly emphasized the importance of collecting DNA from genetically isolated Indigenous populations before they “went extinct.” That rationale “was offensive to Indigenous populations worldwide,” Gachupin says. “Resources for infrastructure and for the wellbeing of the community were not forthcoming, and yet now here were these millions and millions of dollars being invested to ‘save’ their DNA.” The message from the scientific establishment was, she says, “We don’t care about the person. We just want your DNA.” Some activists dubbed the HGDP “the Vampire Project,” believing the only beneficiaries would be Western scientists and people who could afford costly medical treatments.
Excerpts from Lizzie Wade, Bridging the Gap, Science, Sept. 28, 2018