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Tuesday, January 27, 2015

Brewing Controversy: Genetic Testing and Tribal Identity

Why many Native Americans have concerns about DNA kits like 23andme

Havasupai man in front of sweat lodge, 1924 ( NPS/Flickr )
The genetic sequencing company 23andMe recently tapped into its vast bank of data to release a study on genetic origins, producing the biggest genetic profile of the United States ever conducted—big, but nowhere near complete.

Out of more than 160,000 genomes, only 3 percent of 23andMe customers who authorized their data for the study were black, compared with the approximately 14 percent of the United States population who identifies as such. And while the paper traced what percent of white, black, and Latino customers’ ancestry led back to Native Americans, there were no users, as far as the paper reported, who self-identified as native people.

There are a lot of reasons for this. The service isn’t free, and not everyone wants—or can afford—to shell out $99 to learn about their ancestry. But when it comes to Native Americans, the question of genetic testing, and particularly genetic testing to determine ancestral origins, is controversial.
In the past decade, questions of how a person's genetic material gets used have become more and more common. Researchers and ethicists are still figuring how how to balance scientific goals with the need to respect individual and cultural privacy. And for Native Americans, the question of how to do that, like nearly everything, is bound up in a long history of racism and colonialism.

* * *
In many ways, the concerns that Native Americans have with genetic testing are the ones most people have: Who will be using this data, and for what?
 
Today, DNA can tell us a little about a lot of things, from disease risks to ancestral history. But ultimately it’s pretty limited. In fact, 23andMe was recently chastised by the FDA, which claimed the company was overselling the predictive power of their test for medical use. But in the future, that same little sample of DNA could be used for purposes that haven't even been dreamed up yet. People might be okay with their DNA being used to research cures for cancer, or to explore their own genetic history, but balk at it being used to develop biological weapons or justify genocide.

These are questions that anyone who gives their genetic material to scientists has to think about. And for Native Americans, who have witnessed their artifacts, remains, and land taken away, shared, and discussed among academics for centuries, concerns about genetic appropriation carry ominous reminders about the past. “I might trust this guy, but 100 years from now who is going to get the information? What are people going to do with that information? How can they twist it? Because that’s one thing that seems to happen a lot,” says Nick Tipon, the vice-chairman of the Sacred Sites Committee of the Federated Indians of Graton Rancheria, an organization that represents people of Coast Miwok and Southern Pomo descent.

Another reason many tribes struggle with a scientist asking for a DNA sample involves the DNA collection process. Namely, that it requires removal of some piece of the body. In the living, this may seem simple: a swab of the cheek or a quick blood sample. But for scientists who want to study historical DNA, they have to remove a piece of the dead body. It’s a small piece, but DNA analysis is almost always destructive. This, again, isn’t a specifically tribal issue, as Tipon points out. “How would current people feel if their great-great-grandfathers were dug up and their bones were destroyed during testing to prove a theory?” he asked. “Rest in peace means forever, not to be disturbed, not to be studied, unless they consented to that.”

Some of the questions geneticists seek to answer are also provocative among Native Americans. The first is the issue of migration: Where did different people come from? Who colonized the United States first? Where did they go once they arrived? These are questions that archaeologists and geneticists are really interested in because they help paint a picture of how migrations patterns occurred in the United States before white settlers arrived, and how European settlement changed things.
But figuring out where your ancestors came from becomes complicated when it entails a legacy of exclusion of displacement. Tribes each have important cultural histories, that include their origin stories. Many of their histories say that the tribe came from the land, that they arose there and have always lived there. And many of them have more modern histories that include white settlers challenging their right to live where they did. 

So to many tribal people, having a scientist come in from the outside looking to tell them where they’re “really” from is not only uninteresting, but threatening. “We know who we are as a people, as an indigenous people, why would we be so interested in where scientists think our genetic ancestors came from?” asks Kim Tallbear, a researcher at the University of Texas at Austin, the author of Native American DNA: Tribal Belonging and the False Promise of Genetic Science, and a member of the Sisseton-Wahpeton Oyate tribe.

Tallbear says that from her perspective, researchers offering to tell tribes where they’re from doesn’t look any different than the Christians who came in to tell them what their religion should be. “Those look like very similarly invasive projects to us,” she said. Tribes haven’t forgotten the history of scientists who gathered native skulls to prove that native people were less intelligent, and thus less entitled to the land they lived on than the white settlers. To them, these genetic questions of origin look pretty similar.
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