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KNAU and Arizona News

Survey: Navajos express confusion, uncertainty over genetic research ban

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Alex Levine/University of Washington
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Dr. Katrina Claw

A new survey of nearly 700 Navajos shows widespread uncertainty about whether the tribal government should lift a ban on genetic research. The moratorium has been in place for nearly two decades, in part because of concerns about the misuse of Indigenous DNA samples. KNAU’s Melissa Sevigny spoke with the study’s lead author, Dr. Katrina Claw, a Navajo citizen and geneticist at the University of Colorado.

So one of the findings of your survey was that the majority of respondents didn’t even actually know about the ban. Did that surprise you at all?

I was a bit surprised. But I do understand how it could have gone under the radar for many of the tribal citizens.

The survey also found that a lot of people had conflicted feelings about the ban no genetic research, can you talk a little bit about some of the concerns that people had?

I think there’s always a concern about western approaches to healing as well as traditional approaches to healing. A lot of people … might not be able to combine those, so there are definitely cultural hesitancies around that. And then also… in the past there were some studies that targeted Indigenous populations…. This led to a lot of helicopter research in which people, researchers, would come in and sample community members and leave, and never return to the community. I think a lot of Navajo people were concerned about that happening on the reservation as well.

Kind of on the positive side of things, how do you think Navajos might benefit if the ban on genetic research was lifted?

Specifically in my field, pharmacogenomics, we are actively looking at genetic variation in different individuals that directly relate to the types of the medications that individuals should take, and the correct dosage of those medications… I could see a lot of pharmacogenomics really benefiting tribal communities. In fact I work with other tribal communities doing pharmacogenomics but of course can’t do this work with Navajo Nation because of the moratorium … And this is also something we found in the survey: a lot of people, when asked what types of research would they be interested in participating in, health and disease by far the top—the highest frequency from respondents.

Tell me more about that. People were more supportive of doing genetic research related to health, were there topics that they really didn’t want genetic research to be used for?

Yeah, there was a lower frequency of people who approved of research looking at ancestry, tribal ancestry, as well as looking at population genetics and population migration…and there was some concern this would conflict with tribal origin stories, and this was pretty similar to what we hear from other tribal nations as well.

Based on the results of this survey, what do you think needs to be done going forward as the Navajo tribal government considers what to do about the ban?

I think that a lot of this work is already ongoing. Back in 2018 the Navajo Nation approved a working group called the Navajo Nation Genetics Policy Development Working group… Right now they have a draft of a potential genetics research policy for the Navajo Nation… but also in relation to our paper, we found that a lot of people were not quite clear on what genetic research was or what could be done with it. There were myths or misconceptions of genetic research and what it could do, so I think a lot of people wanted just more communication and more conversations about this potential policy or even what genetic research was, and also an increase in genetic literary.

Dr. Katrina Claw, thank you so much for speaking with me.

Thank you, Melissa.