The National Institutes of Health is collecting DNA from 1 million people including Native Americans bypassing tribal consultation, with some Indigenous leaders calling it “biocolonialism.”
“All of Us,” an NIH research program launched in April, plans to use the health data and DNA of Americans to build a precision medicine database for individualized disease treatment and prevention. Already, 100,000 people have signed up.
The program has rolled out to American Indians, Alaska Natives (AI/AN), and Native Hawaiians in cities with large Native populations, such as Seattle, Phoenix, and Minneapolis, a move condemned by the National Congress of American Indians (NCAI), which represents the majority of 573 tribes in the country.
“All of Us Research Program recruitment launch is a reminder that NIH and this program must consult and partner with tribes on how to best protect AI/AN data and tribal sovereignty in research,” NCAI tweeted immediately after the program’s launch.
The US has unique legal and political relationships with sovereign tribal nations as set forth in the Constitution and various treaties and federal statutes that require federal agencies to consult with a tribe on a nation-to-nation basis on any matter that affects them.
While NIH did assemble an All of Us Tribal Collaboration Working Group, there have been no tribal consultations that satisfy treaty or other requirements nine months into the program. The information being collected is sensitive and can have long-lasting ramifications on the individual lives of participants.
Participation in the research could lead to individual full electronic health records and genetic information being shared with pharmaceutical companies, and may also remove an individual’s protection under the Health Insurance Portability and Accountability Act (HIPAA), according to a consent form for the program.
Alarmingly, All of Us’ privacy release paperwork notes, “Once your information is shared with All of Us, it may no longer be protected by patient privacy rules (like HIPAA).” HIPAA, a federal law, requires health care providers and health plans to keep personal health information private but does not apply to private genetic companies such as 23andMe and Ancestry. It also allows sharing and selling of patient data if it has been “anonymized” (identifying details removed).
However, All of Us shares a more significant amount of medical data with researchers and third parties than 23andMe and Ancestry because it includes electronic health records (EHR)—a patient’s complete medical history, including treatment for alcoholism, STDs, etc. All of Us states these “researchers may be from anywhere in the world. They may work for commercial companies, like drug companies.”
And if any DNA-related health issues are uncovered via testing, they must be reported when filing for disability. Those who do not disclose the findings could be found guilty of fraud.
Tribes must be in control of their data to preserve privacy, for intellectual property reasons, and because of spiritual and cultural concerns, geneticist Joe Yracheta, of Indigenous P'urhepécha and Raramurí heritage in what is today Mexico, told Motherboard over the phone.
“Say they find something in your family or tribe, a genetic resistance to some disease they can CRISPR into a rich child. Your family gets nothing”
If tribes or Indigenous researchers are not in control of AmerIndigenous biological tissues and data, it gives license to non-Native researchers to seek whatever genetic resources they can find, including desecrating the bodies of deceased Indigenous ancestors for their genetic material, Yracheta said.
The privacy risk concerns Yracheta, too. Medical articles assert that genetic and clinical information are the same in terms of privacy concerns, which Yracheta argues is not true for Native American communities. “Their genetic data is different from other types of data; it’s unique and easily identifiable in many ways,” Yracheta said.
All of Us advises that in a data breach, there is a small likelihood that someone could access the information they have about participants, and that their information could be misused.
There have also been questions about why the NIH still hasn’t acted on the working group’s recommendations, namely to obtain the free, prior and informed consent of tribal governments before initiating data collection, honor the tribal sovereignty of tribal citizens on and off the reservation, protect their rights and privacy, and share any benefits from their participation with the Native community.
Abigail Echo-Hawk, a citizen of the Pawnee Nation of Oklahoma and director of the Urban Indian Health Institute, a tribal epidemiology center in Seattle and a member of the tribal working group, said All of Us owes a duty to her tribal nation—regardless of where she lives.
“Just because urban Indians reside off reservation or village lands does not mean they don’t fall under the protection and leadership of their tribal nations,” she told Motherboard in an email. “Efforts must be made to ensure that the recruitment of urban Indians by All of Us is not bypassing tribal approval and consultation processes. In addition, meaningful engagement needs to occur that includes urban Indian organizations and leadership.”
Echo-Hawk says tribal nations must be properly consulted so they can assess potential risks and ensure benefits to their citizens.
NCAI followed up with a tweet in November, saying, “AIAN Tribes are still waiting for @NIH to consult with them on the All of Us research study. A report from a workgroup is not a consultation.”
“Nobody wants to do real consultation because it’s expensive and it takes a long time,” Yracheta said.
The NIH is aware that Native Americans are wary of handing over their DNA. Historically, Natives have made very few DNA donations to geneticists’ database, largely due to a history of distrust. In 1989, for example, researchers from Arizona State University convinced the Havasupai, a tribe living deep in the Grand Canyon, that they could alleviate type 2 diabetes plaguing their community if tribal members would donate blood samples—they would search for a link between their genes and diabetes risk.
Not only did the researchers not find anything that could benefit the tribe’s health, they studied their genetic data—without members’ consent—for schizophrenia, inbreeding, and migration, and published their findings in 2004. The scientists’ conclusions challenged the thousands-year-old Havasupai origin beliefs also shared by the Yuma and Mojave.
The tribe sued and reached an out-of-court settlement, which meant no legal precedent was set on what can and cannot be done with a tribe’s genetic data.
Brett Shelton, of the Oglala Lakota Nation and a staff attorney for the Native American Rights Fund, says NIH’s program is an example of “biocolonialism.”
“The issue of biocolonialism has come knocking at our doors, and like all other unwanted advances of colonization within our lives and territories, genetic prospecting is a reality,” Shelton told Motherboard in an email. “Much of life's genetic diversity exists among our peoples and in our territories. Researchers know this is where they will find the genetic diversity—human, animal and plant—needed for their research projects.”
He added, “If Indigenous people or nations choose to participate in studies involving genetics, that is their choice, but they should research the issue further before deciding.”
Since the early days of genetic testing, tribes have started to take more diverse positions on genetics research. Some tribes have agreed to it while others have not yet determined their policies.
The Navajo Nation, for instance, imposed a moratorium in 2002 on genetics research due to a history of scientists conducting research without consent or adequate privacy controls. However, they are reconsidering in light of the moratorium being a barrier when it comes to cancer and the effects of uranium.
An All of Us spokesperson told Motherboard in an email their leadership is committed to taking the time to engage tribal nations. “We see this government-to-government consultation not only as a requirement for a federal program, but also as both a scientific necessity and a moral and social justice imperative.”
She said the All of Us program is in the process of planning consultation for spring or summer 2019, but in a telephone interview on December 13 she confirmed to Motherboard there had been no consultations with the tribes or the NCAI.
As it stands, All of Us is open to everyone, Native Americans included, the spokesperson said.
Yracheta points out that researchers can also obtain DNA from tribal members in the military, federal prisons, and even from suspects upon arrest in some states without tribal oversight. "Tribes need to be aware of that,” he said.
“Say they find something in your family or tribe, a genetic resistance to some disease they can CRISPR into a rich child,” Yracheta said. “Your family gets nothing.”
Dr. Keolu Fox, a Native Hawaiian geneticist, points to the Sami of Finland, who have a protective genetic variation against heart disease. “Any financial proceeds from medical treatments or benefits to humanity must be shared with the Sami people,” he told Motherboard over the phone.
There are also ethical concerns, with so few regulations guiding this fairly new industry. In the 1980s, for example, blood taken from the Nuu-chah-nulth in British Columbia for rheumatoid arthritis research was stolen and used for research on human migration, HIV/AIDS, and drug abuse. The Nuu Chah Nulth had to fight the University of Utah to get back ownership of their blood.
That doesn’t mean American Indians, Alaska Natives, and Native Hawaiians should not participate in genetic research. If Native peoples are to benefit from potential medical discoveries, they need to participate in precision medicine research, Echo-Hawk says.
Ninety-six percent of genome studies are based on people of European descent, said Fox, also a TED Fellow, in a TED talk. The rest of the world is virtually unrepresented—and this is dangerous for Indigenous peoples. One reason is that their reaction to drugs is different based on their genetic makeup.
Fox is working to democratize genome sequencing with the goal of eliminating health disparities, specifically by advocating that Indigenous populations get involved in research. One idea is to have their own “IndiGenomics” research institute.
“We should be educating Indigenous communities and performing the science,” Fox said. “If Native people are involved in every step, it will reduce some of that distrust in research and specifically in genetic research where institutions have used genetic information to challenge (our) origin stories and tell us how our communities are interbreeding.”
Fox said he isn’t shutting out those on the outside. But, he cautions, “The research community needs to immerse itself in Indigenous culture.”