Harper\'s Magazine - 03.2020

ANNOTATION 37

AT IONAT ION

AFRICA

ens the future of genetic research

Schwartz

Oscar Schwartz lives

in Brooklyn.

Researchers founded diversity initiatives, including the 1000 Genomes Project,

which sampled people across five continents, and All of Us, which focused on mi-

nority communities in the United States. These projects claimed to serve the in-

terests of under-sampled groups, but for some they evoked a fraught history of

medical exploitation. Many African Americans remembered the story of Henri-

etta Lacks, a black woman whose cancer cells were taken and used, without her

consent, to develop the polio vaccine in the 1950s. Unethical research on non-white

subjects has continued into the twenty-first century. In 2010, an international team

of geneticists published an article analyzing blood samples from four elders of the

San people, hunter-gatherers who are indigenous to southern Africa, without ob-

taining proper authorization. The Working Group of Indigenous Minorities in

Southern Africa wrote a letter to the journal excoriating the researchers, who, they

said, had displayed “absolute arrogance, ignorance, and cultural myopia.” Gurdasani

believes that some research institutes and pharmaceutical companies use the issue

of diversity to justify a neocolonial approach to sampling—plundering the genomes

of Africa. “They are interested in studying genetic diversity in Africa so they can

develop drugs that can be marketed across the world,” she said.

Since then, the four whistle- blowers have left the institute—Gurdasani, who is now a researcher at Queen

Mary University of London, maintains that she was fired. Stellenbosch University in South Africa, which was

a partner in the project, requested that Sanger return the genome samples it had contributed from people of

Nama ancestry. This type of data restitution has become increasingly common as a way for indigenous groups

to resist exploitation. Since 2017, the National Centre for Indigenous Genomics in Australia has repatriated

hundreds of blood samples taken from Aboriginal Australians; the Navajo Nation in the United States has

had a moratorium on genetic research since 2002; and the San people have established their own code of eth-

ics for use by medical researchers. Some geneticists worry that these protective efforts will hamper progress in

medical genetics and ultimately hurt under-sampled communities. “I think it’s a massive mistake and a massive

missed opportunity,” Carlos Bustamante, a professor of genetics at Stanford University, told me. “You don’t

participate, you won’t benefit.” But Gurdasani believes that the responsibility lies with researchers and phar-

maceutical companies to establish consent. What remains to be seen, she says, is whether the field of genetic

medicine can diversify its research without resorting to the extractive logic of colonialism.

Gurdasani and her team at the Sanger Institute were determined to do things differ-

ently. They obtained consent on a village-by-village basis and built clinics to ensure that

people who were diagnosed with genetic conditions during the sampling process had

access to follow-up treatment. Gurdasani hoped to use the African data they had col-

lected to develop a gene chip—a high-density assemblage of synthetic molecules on a

solid surface the size of a postage stamp—that would allow researchers to examine Afri-

can genomes in the lab. The scientists planned to consult with the relevant communities

to ensure that they consented to, and would benefit from, any attempt to share the data

derived from their genetic material. But in 2017 Sanger went ahead and produced seventy-

five thousand chips in partnership with Thermo Fisher Scientific, a biotechnology

company, before an agreement had been reached. “This was not a naïve mistake,” Gur-

dasani told me. “They probably thought that none of the African institutes or communi-

ties had the money or legal infrastructure to really challenge them. So they just did it.”

Outraged, Gurdasani and three other scientists lodged a formal whistle-blower complaint.

Emails and documents from that year strongly suggest that Sanger intended to manufac-

ture the chips for commercial sale. But after a six-month investigation, outside counsel

hired by the institute concluded that there had been no wrongful exploitation of scien-

tific work. “There was never any attempt or proposal to attempt commercialisation of

genetic material from African communities,” a Sanger spokesperson said.

Image courtesy Springer Nature