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.
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.
“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”
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.