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Genetic Testing and Tribal Identity
Why many Native Americans have concerns about DNA kits like 23andme
By Rose Eveleth

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 few users, as far as the paper reported, who self-identified as native people.*
 

Havasupai man in front of sweat lodge, 1924 ( NPS)


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.


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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.

 

“We don’t want destructive testing, but is dental plaque technically or spiritually part of that person?”

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.

Not all tribes are against genetic testing, though. Dennis O’Rourke is a researcher at the University of Utah. His work focuses on ancient DNA and migration. In other words, it is exactly the kind of research that many indigenous people object to. But O’Rourke works collaboratively with tribes who are interested in what he’s doing. He told me that he brings up the possible issues with ancestral DNA at the very beginning when he starts working with tribes. He calls it a “cultural risk,” the fact that what he finds in his work about where the tribe came from might be at odds with their history. Some tribes, he says, worry about it, while others don’t. “It’s important to be very clear about what my interest in the research questions are,” he said, “so if they’re not of interest to the communities they can make that judgment very early and I don’t waste their time in trying to pursue things that aren’t acceptable.”

And here is where it’s important to remember that Native Americans are not monolithic in their feelings about genetic testing. Different tribes have different opinions, and within tribes each individual can make their own decisions about what is and isn’t okay with them. Tipon recalls a recent case in which a scientist wanted to look at the plaque built up on the teeth of certain remains to tell what people were eating at the time. “We stopped and we thought a minute,” Tipon said. “We don’t want destructive testing, but is dental plaque technically or spiritually part of that person? We had to think about that, and what the benefits of the research might be.” Ultimately, the tribe decided not to go forward with the project, deciding that the plaque was indeed part of the body, and that for it to be scraped off and destroyed wasn’t appropriate.


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It’s hard to talk about genetics and tribal relations without talking about one particular case. In 1990, Theresa Markow, then a researcher at Arizona State University, collected some genetic samples from the Havasupai, who live near the Grand Canyon, in order to research the high rates of diabetes among the tribe. At some point many years later, the tribe learned that their samples were being used in studies beyond the original diabetes work. But unlike previous cases, in which tribes dealt with these kinds of revelations internally, the Havasupai went to court. They closed their borders to any ASU researchers. In 2010, they settled with the University of Arizona for $700,000, and the return of the samples to the tribe.
NASA

The Havasupai case got a lot of media attention when it was settled, and comes up as an example of everything from blatant disrespect toward Native people, to miscommunication, to a witch hunt against scientists, depending on whom you ask. Markow, who now works at the University of California in San Diego, directed me to her lawyer Mick Rusing, who maintains that his client did nothing wrong. Rusing argues that it was clear from consent forms that other research, beyond the study on diabetes, may be conducted from the samples. In the years following the settlement, researchers and ethicists have looked at the lawsuit for lessons, trying to understand what went wrong and what they might learn from the situation.

So what should a geneticist do, if she’s interested in exploring a question that might involve gathering Native American DNA? It depends. Tallbear says that long before any research questions are formulated and samples are taken, the researcher should actually have a relationship with the tribe. “I think people who want to do genetic research on Native American topics really shouldn’t be doing it unless they’ve got a really considerable history of contact with native communities.”

Tallbear explains that to be able to do ethical genetic research on native people in the United States, you need to understand their history. “You have to know something about the history, and about 20th century Native American policy, and how the U.S. as a colonial power dispersed native people from their historic homelands into urban areas and into reservations, how different groups have put tribes together on reservations who never lived together before. You have to know about about relocation and post-World War II politics. If you don’t understand that you can’t begin to ask informed questions about the genetics of Native Americans.”

O’Rourke says that researchers interested in working with Native Americans have to be honest and upfront about their intentions. And be ready to truly work with tribes, and listen to them. Michael Newland, an archaeologist at Sonoma State University says that ultimately, it’s about respect. “To come into a community, any community, any family in the U.S., and say, ‘I know you think you’re from these guys, you’re not, you’re actually from these guys over there,’ is disrespectful, especially if they didn’t ask for it.” Newland has worked with tribal communities on the West Coast for years, and he says that it’s not something that everybody is cut out for. “Bedside manner here counts for a lot,” he said. “It’s not just about scientific research, it requires a whole other skill set that they may not have.”
 

We don’t want to change what our ancestors believed in, we don’t have the right to say that.”

For some, all this may seem antithetical to true science, a field that often seems to think it is above culture. When the Native American Graves Protection and Repatriation Act (NAGPRA) was passed in 1990, requiring archaeologists to return artifacts and remains to Native Americans, the field of archaeology had a heated debate over whether they were destroying their own field. An archaeologist at the University of California, Los Angeles, likened the decision to "the equivalent of the historian burning documents after he has studied them.”

But O’Rourke says that he doesn’t feel that way at all. He says he never feels like he’s being kept from doing research. It just changes how and where he does it. “I’ve never changed my research interest or the questions I was interested in. I might pursue them in a different place or with different communities, but if something that I’m particularly interested in is not deemed as appropriate, that seems not problematic to me, I will quite likely find a different avenue to pursue that research interest.”

And it’s not always the “no” he expects. Once he was asking a tribe to do two studies: one on migration patterns and one on diabetes. He expected they might reject his work on their history, but instead they said no to the health study. Apparently a nearby tribe had cooperated with a researcher looking into a health question, and the results of the study hadn’t been all that complimentary to the community. “‘We’d rather not go down that path,’ they said.” So O’Rourke and his colleague didn’t. “We did a population history thing and had a very good relationship with the community.”


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Tribal people face some of the same tough ethical questions as any individual faces in matters of medicine, death, and ancestry. What happens to your body after you die? What are you willing to give to science in exchange for the possibility of a cure, or just for better future knowledge? These are questions people across the world are asking themselves. And that freedom to ask, to consider, and to decide, is important.

Tipon, for example, is an organ donor. He wants to be cremated when he dies. But he says the key is that he is the one making those decisions. “As a living person, I can give consent for people to do testing on me. Going to the doctor, giving blood, we all do that in this society,” he said. But his ancestors likely wouldn’t make the same decisions. “Our ancestors didn’t traditionally do any of that, they just reburied everything that was spiritually connected. We don’t want to change what our ancestors believed in, we don’t have the right to say that.”

Tipon says that most tribes are struggling to balance what good might come with what harm they might be doing to tradition and their ancestors. “If someone could come to us and say ‘yes, if we destroy this ancestor of yours, maybe we’d find a cure to cancer,’ would we still have the same feeling? We’re still struggling with that. Our traditional cultural feeling is you’re buried, that’s where you rest in peace, but all societies change. We talk about it. We wonder where the right answers are.” 

 

Source:    http://www.theatlantic.com/technology/archive/2015/01/the-cultural-limitations-of-genetic-testing/384740/

 


 

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