"Genetics has a unique risk"

First, I wanted to talk about DNA data. Is there a particular view of the Indigenous community on DNA – it probably it varies – but generally speaking?

There is no unifying view of Indigenous communities on DNA. But it is certain, that a lot of Indigenous people are wary about genetic technologies and the use of genetic data from their populations to make inferences about them. Certain statements have been made about Indigenous peoples over and over again by scientists throughout the brief history of the study of genetics. And often the science has been misused, abused, used against Indigenous peoples. Sometimes it is used to reaffirm a scientific narrative that is culturally ignorant about their origin narratives, for instance. Sometimes it is a mismatch of an evolutionary perspective, in that some scientist just wants to paint an evolutionary picture of adaptation or mal-adaptation Indigenous peoples and immediately use it against us.

For instance, in study of diabetes there are way too many geneticists that have a very genetic-focused view of the study to type 2 diabetes in of Native Americans. But there needs to be more equivalent attention to non-genetic factors related to diabetes. Things that are very real for the health difference and health status such as the fact that a “western commerce diet” has been imposed on Indigenous peoples. The genocidal effects of having a huge portion of our communities wiped out due to colonialism is not a factor in discussions about genetics. And usually it is just a very simple narrative: “Oh we are genetically pre-disposed to x-disease and therefore it is our fault.” and then in terms of a policy funding scenario what that means it is not enough adequate attention to social services to prevent the disease in our community. So, there is just a lot of use of Indigenous peoples owned DNA. Most of them relate to histories of harm that have been perpetuated on us.

From your opinion as a geneticist, what is so special about DNA data in comparison to other health data?

I have an interesting viewpoint as a geneticist. I think we put too much emphasis on genetic factors contributing to disease. It is my hope actually that we don’t just preempt one kind of knowledge, but that we look at all the other factors that relate to disease, things like socio-economic-status, colonial factors, environmental factors. These are factors that are not found in the electronic health record. It is easy to just sequence a sample of saliva or blood.
That being said, genetics has a unique risk in that it doesn’t just biologically identify one of us but everyone that we are related to. So, in this case we have consent issues, we have privacy issues, because then it is not just my decision to consent to a study it is more now into what other peoples who I am related to, my family, what they’re doing with their DNA and in what kind of databases they are depositing that information.

I read that 20 years ago the Navajo Nation instituted a moratorium on genomic research, so why did that happen?

At the time what is now called precision health and genetic studies for that aim had started. The Navajo people, like most other people, did not yet have a full understanding of all the risks related to DNA and also to consenting broadly to the use of DNA by scientists. So, they actually took the very cautious viewpoint of stating: “Until we can fully explain and understand all the implications of contributing our people’s DNA as a resource, we need to fully have a discussion that’s in relation to policy, for instance. And whether or not the benefits for health are overstated.” So, they just took a very cautious viewpoint of stating: “Let’s take a few years to do an adequate amount of consultation and deliberation among the community.” and that process takes a while, especially when you are talking about the largest US Tribal nation. That is a lot of people to engage. So, I think right now, especially where we are in terms of technology being a lot more advanced, an actually more invasive, I think taking that step back has been really important.

Are there research projects ongoing that have an unfavorable approach considering Indigenous DNA?

Global Indigenous populations have appealed to the United Nations to call for the cessation of large-scale diversity projects. Particularly genomic projects that were denounced as “vampire projects” or “helicopter projects”. Scientists would helicopter into a remote Indigenous community, usually one that is disempowered that is not recognized by the colonial government, particularly in Central South America. It is unclear how well the participants consented - was it in their own language, did they adequately explain the risks related to the sampling or giving blood? They would just leave like vampires or vampire bats in the night, taking their samples of blood with them. The individuals or communities were broadly consented to participate in these studies.

Twenty years ago, there were huge concerns about gene patenting and commercialization of DNA. That was a very salient foreboding perspective, because before the end of 2010 companies like 23andme and Ancestry DNA started to emerge, selling direct-to-consumer genetic ancestry tests and their estimation of supposedly Native American ancestry, which is the term that they use, used biomarkers from Asian populations and also from those exploited Indigenous groups from Central South America. Ancestry DNA very famously or infamously got a billion dollars profit every holiday quarter since 2017 to when they were sold. All these people were buying genetic ancestry test kits for Christmas, “giving the gift of history”. So, a billion of dollars every holiday quarter and then they were sold to a venture capitalist firm by the name of Blackstone for like 4.7 billion dollars. This is a lot of money being collected from Indigenous biomarkers and Indigenous peoples, who are still dying. A New York Times reporter went back to one of the Indigenous central Amazonian Indigenous communities and asked: “What was is that the scientists promised you?” and they said: “We were promised medicine.” They were really outraged to learn that access to their genomic information has been sold by Coriell Cell or other repositories for about 85 dollars a vial. So, they were being used by biolabs or researchers all over the world. In that instance the commercialization and privatization it is not as clear as with 23andme or Ancestry. Those are for profit companies developing a product. Coriell is a non-profit institute but it is still a form of exploitation of information taken from Indigenous peoples if they promise one thing and their samples are used for something else.  

What are some specific risks involved for Indigenous communities in participating in genetic research projects?

The risks for many people who contribute their DNA to studies is basically the same. It biologically reidentifies everyone related to you. That part is true for all peoples. But the part that is especially true for Indigenous people is that we have large families with small generation gaps, and we are also a very small population. Thus, one individual is a large percentage of that person’s population group. In this case, one Indigenous person’s DNA has the ability to reidentify huge portions of our communities, relative to a person of European descent. So that makes genomic racial profiling a huge issue for us. It is a huge portion of our concern related to our people’s privacy.

In the US especially, but also in other areas where the recognized authority of Indigenous people is tied with our identities. When those identities are then politically linked to Native American and this misunderstood notion of what blood quantum is, then you have the potential of risk that individuals who don’t know any better to start making claims of percentage of being Native American as being equivalent to making a biological claim to being Indigenous. That has the potential to usurp our very rights away from us.
Blood quantum is a system that was created so that we were meant to dilute ourselves and our right to access to resources. With every passing generation that we happened to survive assimilation or termination techniques by the US government, we would still be reducing our percentage right to a resource that we could use to economically sustain ourselves. So, that is really scary when lawmakers have this unfortunate and incorrect notion of what Native American ancestry is what it means.

In the science community there is this movement for more open data and open science to improve science and to make collaborative work possible. It seems that there is a conflict between this and protecting people’s privacy. Is there a conflict within you between the scientist and the Indigenous community member?

There is nothing to resolve. Indigenous peoples should have ultimate agency and authority over their people’s DNA. The part that researchers are upset about is that they don’t get to make the decisions of what constitutes an adequate or ethical research setting anymore. They are upset that they no longer get access to data whenever they want. If Indigenous people want to create their own biological repositories and if they want to house data for themselves that doesn’t mean that Indigenous people are blocking the progress of research. All it means, is that they are just exercising equitable authority over decisions about who gets to access their people’s data. That’s it. It’s not anti-progress. It’s not anti-science or any of this junk. It’s just pushing back and ensuring that they are able to have equitable say in what happens to DNA and data collected from their peoples. That’s it.

I read about the Indigenous data sovereignty movement, what kind of principals does it follow?

Indigenous data sovereignty is the right for Indigenous nations to assert decisions related to their peoples. It’s not new by any means. It’s just that we finally have enough Indigenous academics to assert that viewpoint to non-Indigenous peoples and now researchers are being forced to reconcile with the fact that Indigenous peoples do have sovereignty in research. It just seems new, because now we are publishing in the same places as non-Indigenous researchers. Open data sharing movements utilize the FAIR principles – Findable, Accessible, Interoperable and Reusable – that are about centering right of justice of researchers access to data. Obviously, I have the viewpoint that communities and people should have that authority, not researchers. So, I’m really happy, that a number of Indigenous academics from the Native Nations Institute from the University of Arizona came up with the idea of the CARE principles – Collective Benefit, Authority to Control, Responsibility, and Ethics. We are not ensuring or talking about: “Does this research benefit science?” – whatever that means, usually that determination is made by researcher, but: “How does the research and the data benefit the communities that should be active participants in the research?” So, I’m really excited about that viewpoint. Because, if we are talk about reversing the histories of harm, which seem to be cyclical, if we want to break that cycle, we need to think about what equity means in research.

You are a co-founder of the Native BioData Consortium – what is it and what does it do?

The Native BioData Consortium is the first Indigenous led biological data repository and research non-profit for Tribes in the US. We have a wealth of Indigenous scientist working with Tribal community members and leaders to create a bio-bank. So that we can collect Indigenous peoples’ samples from the nations that we work with, really re-centering all these questions related to research access and data governance back to Tribes. What we found when we first started was that federal Tribes and leaders had an issue with working with the National Institutes of Health (NIH) or federally funded research. Because in the US, federally funded studies have to have their data be deposited into a database, usually the Genotypes and Phenotypes (dbGaP) database of the NIH. So, collections of Indigenous peoples’ biomarkers go into federally funded bank that they no longer have access to. The Consortium has been the result of several years of Tribes asking: “Why can’t we exercise better authority on researchers access to our peoples’ data. Why is this such an issue?”. We found that Tribal leaders were actually uncomfortable with their data being housed somewhere. It wasn’t necessarily the science that they were as concerned about, it was the ongoing data access. Thus, if we remove that barrier and provide an alternative, by for instance creating a Tribally managed biobank or resource repository, then we could perhaps change and encourage participation from tribes. That was our central promise, to have a Tribal repository, so that the Tribes would have trust in the scientific process.

You said you are part of this bio bank that collects samples separately and securely. My question would be, if you do genetic research with this, doesn’t it always have a danger that social effects are explained with biology?

The great thing about working with communities and community members is that they have lived in their lands and know more about what locally affects their health than non-Indigenous peoples do. They have a fundamental understanding of the changes to diet and lifestyle and environmental factors that are related to a disease. So, working with the communities, we are enabled to look at these more holistic questions of all our contributors related to health. Having it in one bio repository means that we can harmonize across all these different data sets. So rather than building a logistic model that only looks at genetic factors and only looks at electronic health record data, we can include all these other types of information like environmental and colonial factors that may actually be more explanatory for disparities in health of Indigenous peoples.

Thanks for the conversation!

Interview by Dr. Isabelle Bartram. Transcription by Kena Stüwe.