Tag Archives: DNA of indigenous peoples

Who Owns your Cells? the case of Henrietta Lacks

In 1951, a young mother of five named Henrietta Lacks visited The Johns Hopkins Hospital complaining of vaginal bleeding….As medical records show, Mrs. Lacks began undergoing radium treatments for her cervical cancer…. A sample of her cancer cells retrieved during a biopsy were sent, without her knowledge or consent, to Dr. George Gey’s nearby tissue lab. For years, Dr. Gey, a prominent cancer and virus researcher, had been collecting cells from all patients who came to The Johns Hopkins Hospital with cervical cancer, but each sample quickly died in Dr. Gey’s lab. What he would soon discover was that Mrs. Lacks’ cells were unlike any of the others he had ever seen: where other cells would die, Mrs. Lacks’ cells doubled every 20 to 24 hours.

Today, these incredible cells— nicknamed “HeLa” cells, from the first two letters of her first and last names — are used to study the effects of toxins, drugs, hormones and viruses on the growth of cancer cells without experimenting on humans. They have been used to test the effects of radiation and poisons, to study the human genome, to learn more about how viruses work, and played a crucial role in the development of the polio vaccine.

In July 2021, the family of Henrietta Lacks has hired a prominent civil rights attorney, who says he plans to seek compensation for them from big pharmaceutical companies across the country that made fortunes off medical research with her famous cancer cells…The legal team is investigating lawsuits against as many as 100 defendants, mostly pharmaceutical companies, but they haven’t ruled out a case against the Johns Hopkins Hospital.’

Excerpts from Family of Henrietta Lacks hires civil rights attorney to seek funds over famous cells, Washington Post, July 31, 2021, and https://www.hopkinsmedicine.org/henriettalacks/

Genomic Surveillance

The use of DNA profiling for individual cases of law enforcement has helped to identify suspects and to exonerate the innocent. But retaining genetic materials in the form of national DNA databases, which have proliferated globally in the past two decades, raises important human rights questions.

Privacy rights are fundamental human rights. Around the world, the unregulated collection, use, and retention of DNA has become a form of genomic surveillance. Kuwait passed a now-repealed law mandating the DNA profiling of the entire population. In China, the police systematically collected blood samples from the Xinjiang population under the guise of a health program, and the authorities are working to establish a Y-chromosome DNA database covering the country’s male population. Thailand authorities are establishing a targeted genetic database of Muslim minorities. Under policies set by the previous administration, the U.S. government has been indiscriminately collecting the genetic materials of migrants, including refugees, at the Mexican border.

Governments should reform surveillance laws and draft comprehensive privacy protections that tightly regulate the collection, use, and retention of DNA and other biometric identifiers .They should ban such activities when they do not meet international human rights standards of lawfulness, proportionality, and necessity.

Excerpts from Yves Moreau and Maya Wong, Risks of Genomic Surveillance and How to Stop it, Science, Feb. 2021

A Way to Monetize African People: their DNA

Whistleblowers who formerly worked at the Cambridge-based Wellcome Sanger Institute claimed in October 2019 the institute wanted  to use the DNA samples it obtained from universities across Africa to make money.  They said staff there planned to build a medical research tool, gene chips , based on the DNA, which it could then have sold commercially.

As a result the Stellenbosch University in Western Cape has called for the Sanger Institute to return the DNA samples to the African universities it got them from.  Critics argued the people who donated the samples – members of indigenous communities such as the Nama people – did not consent to it being used this way.    The DNA samples were collected by various African universities and the Lebanese American University in Beirutl.  The samples were shared under so-called ‘material transfer arrangements.’   DNA donors included members of indigenous communities — such as the Nama people of Botswana, Namibia, Uganda, and South Africa.

Participants were reportedly told samples would only be used to study ‘population history and human evolution.’…  The Stellenbosch University in South Africa reportedly wrote that it had provided DNA samples from the Nama people ‘to be used solely for research purposes.’  ‘It was recently brought to [the university’s] attention that […] the Wellcome Sanger Institute intends to proceed with commercialisation of the research, data and Nama DNA,’ they continued.  ‘This conduct of the Wellcome Sanger Institute raises serious legal and ethical consequences.

South African scientists demand the return of hundreds of tribal DNA samples after a British institute was accused of trying to use them to make money, Daily Mail, Oct. 14, 2019

By Hook or By Crook: Harvesting DNA of Indigenous Peoples

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