For Vulnerable Populations, the Thorny Ethics of Genetic Data Collection

"In 2009 researchers collected DNA from four elderly men in Namibia, each from one of the many San indigenous communities scattered across southern Africa. A year later, analyses of the men’s DNA were published in the journal Nature — alongside that of South African human rights activist Desmond Tutu. The intention, in part, was to increase the visibility of southern, indigenous Africans in genetic-based medical research. Soon after, a nongovernmental organization (NGO) representing indigenous minorities in Southern Africa took issue with the consent procedures used to gather the data and wrote to Nature’s editors accusing the paper’s authors of “absolute arrogance, ignorance, and cultural myopia.” ...

Researchers with All of Us have already collected data from about 1,600 Native Americans, some of whom live in cities outside of sovereign lands, where tribal approval is not necessary for genetic research, according to Krystal Tsosie, a geneticist at Vanderbilt University who is co-leading a study in collaboration with a tribal community in North Dakota .

“Obviously there’s an interest in monetizing biomarkers collected from diverse populations and underrepresented populations,” Tsoise said, so without adequate protections, “the concern becomes about exploitation.” ...

But studies restricted to descendants of Europeans will only find associations between diseases and “[genetic] variants that are common in European ancestry populations,” said Martin....

Indigenous-rights organizations criticized the project, taking issue with being treated as mere objects of scientific interest and potential for commercialization. All of Us, more recently, has run into similar objections from the National Congress of American Indians....

The concerns are linked to the long history of exploitative encounters between researchers and vulnerable populations. The Tuskegee Study — in which the U.S. Public Health Service withheld treatment from African American men with syphilis — lasted from 1932 until 1972, ending less than 20 years before the HGDP proposal. And in 1989, researchers from Arizona State University collected DNA samples from the Havasupai Tribe and reused the data for research to which the participants hadn’t consented: on schizophrenia, inbreeding, and migration history. Tsosie said this context has created a “climate in which we’ve seen tribes deciding to disengage from biomedical research completely.”

All the geneticists and ethicists Undark spoke with agreed that community engagement is crucial to establish trust. But they didn’t agree on the degree of the engagement. Some believed that gaining the consent of communities is necessary for ethical research, while others said it was enough to have respect and open dialogue between researchers and the people they’d like to study.....

The gap between individual and collective consent is partly responsible for the continued friction between genetic science and indigenous peoples. Collective consent, said Tsosie, who is herself Navajo, is “more culturally consistent with how tribal groups govern themselves.” In 2017, Andries Steenkamp, a San leader, and Roger Chennells, a lawyer, wrote that the Nature study failed in this regard by only getting “informed consent from the indigenous individuals who participated.”

Not everyone agrees that collective consent can or should be a requirement for all genetic studies...."