“ 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 National Institutes of Health is collecting DNA from 1 million people including Native Americans bypassing tribal consultation, with some Indigenous leaders calling it “biocolonialism.”

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.

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.

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.

“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 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.

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.