Native BioData: Genetics Research For Natives, By Natives
Indigenous peoples have been subjects of western study for centuries. Native BioData Consortium responds with Indigenous-led science.
IN THIS POST: Medical and pharmaceutical abuses of Indigenous peoples and other marginalized persons; ignoring the principle of ‘informed consent’; the antidote: independent biobanks.
Indigenous peoples have been subjects of western study for centuries.
The history of western study of Indigenous peoples is rife with unethical behavior, lack of clear communication, disrespect of cultural and spiritual beliefs, failure to address the interests and priorities of Indigenous communities, and co-optation and theft of traditional knowledge (e.g., medicinal plants).1
In recent years, western exploitation of Indigenous peoples has extended to mining of potentially patentable genetic material — DNA.
Joseph Yracheta (P'urhépecha & Rarámurì), co-founder, Board Vice-President, Executive Director and laboratory manager of the Native BioData Consortium, says Indigenous peoples are in “the 2nd Era of Discovery”.
Krystal Tsosie (Diné), co-founder and Board Secretary, says there's a word for the gathering of genetic samples and data from Indigenous people:
"It's … colonialism."
Native BioData Consortium is a nonprofit research institute led by Indigenous scientists and tribal members to ensure that biomedical knowledge gained from Indigenous peoples serves Indigenous communities.
Yracheta emphasizes that the biggest concern is ownership not only of biological samples but of the data derived from them.2
Both Yracheta and Tsosie note a troubling trend where biological and genetic data obtained through open-access platforms is becoming commodified. These practices reflect a broader turn toward what American author and Harvard University professor Shoshana Zuboff has called "surveillance capitalism."
On August 14, 2023, Yracheta posted on X (Twitter):
We are “Fed” up & we are far past the point of incrementalism's "Waiting". AI has forced the issue.
He pointed to a July 2020 article in the New England Journal of Medicine, “The Illusion of Inclusion — The ‘All of Us’ Research Program and Indigenous Peoples’ DNA”, which said:
“Digital sequence information derived from human genomes [has] emerged as a top global commodity … [and] the genomes of Indigenous peoples are a treasure trove of unexplored variation.”
Native BioData responds:
“In this era of ‘Big Data’, Indigenous groups are at particular risk for erasure. Our goal is to build more robust datasets that encompass ALL aspects of health: biological, cultural, socioeconomic, etc., to investigate health outcomes that actually benefit Indigenous people.”
Native BioData operates a biorepository (or “biobank”) for Indigenous DNA on Cheyenne River Sioux Tribal lands. This leverages Indigenous sovereignty to keep control of biological samples and data.
Native BioData board members and Community Advisory Group members explain the biobank and the importance of Indigenous genomic and data sovereignty in this 5-minute video:
EXAMPLES OF VIOLATIONS OF INDIGENOUS DATA OWNERSHIP
Researchers promised to collect DNA samples and perform genetic studies of diabetes. Without approval from the Havasupai, researchers used the DNA samples for unrelated studies on schizophrenia, migration, and inbreeding.
The case was filed in 2004 and settled in April 2010, with the university agreeing to financial compensation and, most significantly, return of the DNA samples.
DNA samples collected to study rheumatoid arthritis were instead used for studies on human migration and retroviruses. Hundreds of academic papers resulted on topics as diverse as HIV/AIDS and population genetics.
Larry Baird (Chair, Nuu-chah-nulth Research Ethics Committee, formed in the aftermath), said:
“Richard Ward taught us not to trust researchers just like the Residential School taught us not to trust the Church. …We’ve … learned a lot about the dark side of scientific research. Our eyes are wide open now.”
Researchers working on identifying phenotypes associated with high- and low-nicotine metabolism used the term ‘warrior’ to hypothesize a connection between population genetics, social traits (aggressive behavior in monkeys), and health outcomes (Māori rates of smoking cessation).
The inaccurate association of a specific phenotype with a specific ethnicity represented the Māori as a genetically aggressive population.
Secretions of an Amazonian frog used by Indigenous Peoples as a medicine in cleansing and spiritual rituals are full of peptides that researchers have identified for the next generation of antibiotics and other valuable pharmaceuticals.
The ensuing biocolonial research, though it depends on Indigenous knowledge, devalues, and obliterates Indigenous traditional knowledge, practices, and ways of understanding life and biodiversity.
THE HENRIETTA LACKS CASE — OTHER MEDICAL RESEARCH ABUSE
The story of Henrietta Lacks and the ‘HeLa cells’ shows bio-science abuse in the non-Indigenous world.
On August 1, 2023, a lawsuit was settled regarding the estate of Henrietta Lacks, a black woman whose cells were taken from her while she received cervical cancer treatment in a segregated Johns Hopkins Hospital ward in 1951.
The cancer treatment didn’t work, but Henrietta’s cells, nicknamed “HeLa cells”, were used in the decades since by biotechnology companies to develop lucrative laboratory products. The cells continue to circulate in laboratories around the world.
Dr. Sherri Tenpenny says ‘HeLa cells’ are” the most extensively used human cell lines in medicine and medical research today”. She says, “The Lacks’ story [is] one …of medical abuses targeting racial and economic classes by medical researchers.”
FREE, PRIOR, AND INFORMED CONSENT
The principle of ‘free, prior, and informed consent’ would seem to be the antidote to scientific invasion of bodies and communities. But we’re not there yet.
Dr. Tenpenny says:
“NIH has discussed changing the Common Rule, the US government policy on funded research, so that consent would be required from anyone regarding any biological sampling, even if the specimens are de-identified. But that has yet to be completed.”
The United Nations Declaration on the Rights of Indigenous Peoples incorporates the principle of ‘free, prior, and informed consent’ in several Articles, including this provision that is broad enough to encompass biological takings:
“States shall provide redress through effective mechanisms, which may include restitution, developed in conjunction with indigenous peoples, with respect to their cultural, intellectual, religious and spiritual property taken without their free, prior and informed consent or in violation of their laws, traditions and customs.” [Article 11.2]
But just as Dr. Tenpenny says about the NIH rule, “that has yet to be completed.”
In fact, it may never be completed.
When President Barack Obama endorsed the UN Declaration, he did so with a ‘signing statement’, saying the United States interprets…
“…the Declaration’s provisions on free, prior and informed consent… [to mean a] call for a process of meaningful consultation with tribal leaders, but not necessarily the agreement of those leaders, before the actions addressed in those consultations are taken.”
A dictionary will tell you that ‘consent’ means ‘agreement’.
The US makes up its own definition.
THE ANTIDOTE TO RESEARCH ABUSE — INDIGENOUS BIOBANKS
An October 2020, letter to the editor of The American Journal of Biological Anthropology from a group of scientists led by Native BioData’s Tsosie and Yracheta said:
The antidote to exploitation of Indigenous bodies and lands by biological anthropology and pharmacology is the creation of Indigenous-led regional, independent bio-data repositories.
Native BioData is walking that talk.
“Genomic Research Through an Indigenous Lens: Understanding the Expectations”, Annual Review of Genomics and Human Genetics, Vol. 20:495-517 (August 2019)
“How Indigenous scientists are using biomedical research to seek ‘genomic justice’”, CBC Radio (September 28, 2021)
Shows that to the extractive/colonial mindset, not much if any difference between lands 'out there' and DNA ' in here'. Good to know of Native BioData and their good works.
About that 2004 Havasupai case that settled in 2010, if I'm not mistaken the fine was a slap on the wrist, like $10,000. Not a deterrent to the bad conduct, especially considering the enormous monetary value they gained. Inviting repeat offenses.