Why Native Americans are concerned about potential exploitation of their DNA

Image via Boston Public Library (Creative Commons)

 

 

Why some ancestry might not show up in your DNA

In "Ancestry & Evolution"

 

Arvind Suresh | February 2, 2015 | Genetic Literacy Project

Until the advent of genetic genealogy, knowing your ancestry meant combing through old records, decoding the meaning of family heirlooms and listening to your parents and grandparents tell you about the ‘good old days’. For anthropologists and archaeologists interested in going back even further in time, the only reliable means of understanding human history were trying to interpret ruins or remnants of skeletons or other information uncovered at the site of remains.

DNA testing has changed all that, allowing us to delve far deeper into our past than before and with a much higher degree of accuracy. Although there are many issues stirred by DNA testing, none is more provocative than interpreting our family and tribal ancestries.

Nowhere is this more apparent than among the Native American tribes in the United States. I recently wrote about a large scale genetic analysis among the American population by personal genetics and genealogy company 23andMe, using its extensive database to begin to decipher the ancestral origins of various ethnic groups in the United States.

Though the study involved more than 160,000 people, less than less than one percent of those who participated self-identified as Native American. Rose Eveleth, a journalist writing for The Atlantic suggests that this lack of participation may have a lot to do with how native tribes perceive genetic testing,

But when it comes to Native Americans, the question of genetic testing, and particularly genetic testing to determine ancestral origins, is controversial. […] 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.
[…] 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.

Eveleth references the widely publicized case where the Havasupai tribe living near the Grand Canyon sued an Arizona State Unviersity scientist for using genetic samples collected from the tribe to conduct research outside of the purpose of the original study. The crux of the issue was the consent form which covered a broad range of uses for the samples–a fact that the tribes claimed was not explained to them appropriately.

Although the tribe won the case, reclaimed the samples and settled with the university for $700,000, the issue captured the front page of the New York Times and put “every tribe in the US on notice regarding genetics research” as Native American tribal research ethics expert Ron Whitener quoted in an article titled “After Havasupai Litigation, Native Americans Wary of Genetic Research” published in the American Journal of Medical Genetics Part A.

Around the same time that the genetics of the Havasupai were being studied, another high profile issue bought Native American tribes in conflict with researchers. The ‘Kennewick Man’, an approximately 9000 year old skeleton was discovered by accident in 1994 in Kennewick, Washington. The Umatilla tribe which were indigenous to the region sought to reclaim the remains under the 1990 Native American Graves Protection and Repatriation Act to bury it in accordance with traditions. Anthropology researchers who wanted to study the skeleton however, argued there wasn’t enough evidence to convincingly show that the remains were Native American and therefore should not be returned. This resulted in a widely publicized eight year long legal dispute between scientists and the government that ended in 2004 with the court ruling in favor of the archeologists, a decision that the tribes were expectedly unhappy with.

Now, the issue has come under the spotlight once again with the Seattle Times reporting last month that preliminary DNA analyses indicated that the Kennewick Man was indeed of Native American ancestry. Apart from settling the academic debate, this finding could reignite the social and political controversy that surrounded the affair as the tribes engage in renewed efforts to retrieve the skeletal remains and prevent further research on it.

While it is understandable that tribes are concerned about how their personal DNA (and that of their ancestors) is used, it is a stretch to think that this information might be used to “develop biological weapons or justify genocide” as Eveleth suggests. Nevertheless, genetic testing be it for public health or anthropological purposes is a tricky and thorny path to tread, particularly among Native Americans as she points out in her article

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.
[…]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.”

Razib Khan, an evolutionary genetics researcher at the University of California, Davis, takes issue with how Kim Tallbear, the anthropology researcher at the University of Texas at Austin and author of the book “Native American DNA: Tribal Belonging and the False Promise of Genetic Science” discusses the topic in the Seattle Times article (emphasis Khan’s).

Let’s not beat around the bush here, Native Americans and the government and culture of the United States have a fraught relationship. That is true. But today genetics has pretty much zero relevance to the various political debates and arguments. Issues like tribal membership are determined by the cut & thrust of politics, not genomics.[…] And contrary to the implication that Tallbear makes, most scientists who work on Native American genomics don’t do so because of a deep interest in overturning the religious traditions of Native Americans, but because they are interested in the human story, of which Native Americans are an essential part. Rather than ethnic particularism the motives of scientists on the whole are those of universalist humanism.
So one can understand why political activists might balk at the inquiries of geneticists, as universalist humanism often causes problems for those engaged in the great game of ethnic particularism. But what about the academics who lend their voice in support of the latter?

In his analysis, Khan is frustrate–not at how the public is debating the issue but specifically at academics, who give in completely to personal biases and refuse to accept unequivocal genetic evidence. He compares Kim Tallbear with sociologist and intelligent design apologist Steve Fuller, ending with this furious volley (emphasis Khan’s).

Here is an indisputable fact: science is not religion, and the two are very different enterprises. If you don’t accede to this distinction, you have just lost all touch with the empirical world […] The flight from empiricism is exactly what has occurred to many scholars within science studies, probably because that’s where the career incentives are.
Most academics who are skeptical of the “objective” “truth” “claims” of “science” also agree with this fact when they have to put their choices where they mouth is. If they’re diagnosed with “cancer” they won’t put chemotherapy in quotations or demand the services of a tribal shaman. It’s going to be the best science for them and their family. That’s not just a theory, that’s a fact.

While Khan is right, many tribes are quite reluctant to consent to using their DNA or that of their ancestors for research. However, antagonizing the tribes through public personal and legal battles might only serve to alienate them further. In her Atlantic essay, Eveleth outlines the more cautious approach taken by anthropologist Dennis O’Rourke at the University of Utah and how the native tribes contend with their mixed feelings about research.

… O’Rourke works collaboratively with tribes who are interested in what he’s doing. […] 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.”
[Nick Tipon, vice-chairman of the Sacred Sites Committee of the Federated Indians of Graton Rancheria] 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.”

This is one of the forks on the road where science and society could part ways at the cost of both–to travel together will require a commitment to strong science and common sense.

Arvind Suresh is a science communicator and a former laboratory biologist. Follow him @suresh_arvind.

Additional Resources

• Dogs tell story of ancient human migration, Science 2.0
• Why don’t indigenous Americans look like their pioneer ancestors, National Geographic
• Melting pot? Not in the USA. Yet. But coming soon?, Genetic Literacy Project

The debate will rage on if any tribe should trust a scientist...I wrote an article called BLOOD FOR MONEY about the film The Leech and Earthworm.  It's posted at www.academia.edu... Trace

Brewing Controversy: Genetic Testing and Tribal Identity

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

Rose Eveleth Jan 26 2015, Atlantic Monthly

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.

 

“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.

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