San people of Africa draft code of ethics for researchers

CAPE TOWN, SOUTH AFRICA—Scientists have studied the San people of Southern Africa for decades, intrigued by their age-old rituals and ancient genetic fingerprints. Now, after more than a century of being scrutinized by science, the San are demanding something back. Earlier this month the group unveiled a code of ethics for researchers wishing to study their culture, genes, or heritage.

The code, published here on 3 March, asks researchers to treat the San respectfully and refrain from publishing information that could be viewed as insulting. Because such sensitivities may not be clear to researchers, the code asks that scientists let communities read and comment on findings before they are published. It also asks that researchers keep their promises and give something back to the community in return for its cooperation.

“We’re not saying that everybody is bad. But you get those few individuals who don’t respect the San,” says Leana Snyders, head of the South African San Council in Upington, which helped create the code.

The San created the code because of past transgressions, including use of insulting language such as the term “Bushmen,” using jargon when communicating with the San, failing to consult study communities about findings before publication, and approaching individuals before asking community leaders for permission. Snyders cited a 2010 study in Nature that she says committed several of these mistakes and raised awareness in the community about the issues. Approval by university research ethics committees is not sufficient to comply with the code, Snyders adds. The San community needs to be involved in reviewing research proposals and have a say in the design and conclusions, she says.

Snyders also notes that despite all the interest from scientists, the San have not benefited from their star research status. “When a researcher comes they enrich themselves of our culture and our knowledge. But our communities remain in poverty; their daily life does not change. We want to change that,” she says.

Benefits to the community do not have to be monetary, but could be in the form of knowledge, or educational or job opportunities. Communicating research results back to the community is paramount, Snyders adds, in order to avoid derogatory terms. “Before somebody publishes anything they need to discuss it with the community. Then the community can say: You don’t understand, or that it’s damaging.” Researchers that flout the code will be blacklisted. “If it comes to that, we will blacklist and close the door and make sure you don’t come back,” Snyders says.

The San are not the first indigenous population group to impose such codes on research. The Aboriginal Australians and Canada’s First Nations and Inuit have drawn up similar codes, which standardize consultation, the benefits due to participating communities, and data storage and access. But this is the first research code produced by an African group. For now it is formally adopted only in South Africa; Snyders and her colleagues hope to roll it out to San who live in neighboring Botswana and Namibia.

The code does not place unrealistic demands on scientists, says Himla Soodyall, director of the Human Genomic Diversity and Disease Research Unit at South Africa’s University of the Witwatersrand in Johannesburg. But others point out that the code focuses on past transgressions, and doesn’t refer to recent efforts to respect and involve communities, such as guidelines for genomics work on vulnerable populations prepared in 2014 by the Human Heredity and Health in Africa program. As a result, the code may present an overly negative view of researchers and discourage communities from participating in studies, says Charles Rotimi, founding director of the National Institutes of Health Center for Research on Genomics and Global Health in Bethesda, Maryland.

Reuse of data is another potential stumbling block. The San refuse to grant broad consent for other researchers to reuse data for purposes not specified in the original agreement. This restriction is not spelled out in the code, but is the position of the South African San Council, Snyders says. “Should any other research institution want to use the data, they need to acquire informed consent from the council.”

But good scientific practice allows other scientists to try to replicate analyses, says geneticist David Reich of Harvard Medical School in Boston. He is a leader of the recently assembled Simons Genome Diversity Project, which contains 300 high-quality genomes from 142 populations, including the San. “Other researchers need to be free to reanalyze the data to come to their own conclusions. … If this is not possible, then science cannot be done,” he says.

*Correction, 22 March, 4:42 p.m.: This story has been corrected to remove any implication that because the San's ancestors branched off early from other human populations, living San are unusually closely related to ancestral humans.