Navajo geneticist Krystal Tsosie thought she would target her career toward cancer biology. She studied nano- and microparticle research but soon faced a dilemma in her research trajectory.
“There are very few Native Americans in STEM fields and in research in general,” said Tsosie, a bioethicist with the Native BioData Consortium. “I felt like if I were to stay in cancer biology, that if one of my inventions or innovations were ever going to go from bench-to-bedside, chances are, unfortunately, that those innovations probably wouldn’t trickle down to members of my own community within my lifetime.”
So she decided to pursue a master’s degree in bioethics, where she learned why many Native Americans are hesitant to participate in genomics research projects. She noticed there were several genetic controversies involving data collection that affected Indigenous communities in the last decade.
Indigenous researchers are calling for a more ethical use of Indigenous data gathered in large-scale projects. They believe the data is being used to overpromise benefits that never reach the community.
“American Indigenous peoples have been unfortunately exploited in terms in genetics research,” Tsosie said. “This is not something that occurred X number of decades ago. This type of exploitation continues to exist.”
Researchers conduct large-scale genomics projects under the promise of unlocking medical mysteries and helping people find better health care. But the reality is that most Indigenous communities never see the benefits of their data.
Many companies and commercials promise that a DNA test can help determine your cultural identity via genetic ancestry and your inherent health risks. Geneticists say this is a dangerous correlation.
“We draw effectively arbitrary lines in how we group … and how we characterize populations using genetics,” Tsosie said. “We (should not) biologically link cultures and different heritages and ancestries with genetics, because there’s a lot of unfortunate inferences and suppositions that could be made.”
Joseph Yracheta, senior research scientist at the Native BioData Consortium, said this is part of the so-called overpromise of genomics.
“(Researchers) thought they were going to find all of these solutions, and it turns out associations with health disparity were not that strong,” he said. “It’s diet, it’s behavior, it’s socioeconomic status.”
However, there are still gaps in our current understanding of genomics. Most of the genomic data that researchers know today is based on white bodies.
“When we do predictions of how potentially pathogenic a mutation might be, they’re not very effective for historically marginalized communities, because the vast majority of individuals that have been sequenced are of western European ancestry,” said Dr. Keolu Fox, professor of genetics at the University of California, San Diego.
Fox said it’s important to include Indigenous communities in the conversation around preventive medicine, but this needs to be done ethically. Native communities have been historically exploited by research teams, so they need to be included in the conversation.
The National Institutes of Health participates in genetics and genomic projects with Native communities and hopes to continue these conversations. Dr. Lawrence Brody said this is the main mission of the NIH.
“We have a mission to improve health, and … improve the health of all people,” he said. “So we want to make sure that tribal communities participate in the benefits of health, which, at times, may mean participating in research, recognizing that they really are autonomous and that the research question needs to be driven by the communities.”
Commodification of data
According to Fox, data is the number one commodity in the world. There’s a large market to collect all kinds of data, including genetics. Even the new COVID-19 vaccines, which use mRNA, rely on this genetic carrier to create inert coronavirus proteins that activate antibodies to fight off the illness.
But this is where the danger can lie for Indigenous communities. Companies — with customers typically granting permission through just a click of a user agreement rather than an in-depth read — can sell and resell their data for a profit. Individuals and groups such as Native communities rarely reap the benefits.
Jacquie Haggarty, vice president, deputy general counsel and privacy officer of the popular 23-and-Me genetics site, provided a statement for this story. She said customers can choose to have their data sample — the sample of saliva — discarded after testing, or data samples can be kept up to 10 years. Customers can also choose to have their sample discarded through their account settings.
Another issue comes from the idea of tribal sovereignty in the United States. Yracheta said there are disparities in the interests of tribes and the federal government.
“(Researchers) also believe that the tribal resources, whether their DNA or any other kind of data, belongs to who pays for it,” he said. “Since it’s paid for by public tax dollars, then it should belong to every United States citizen and be shared freely, but the tribes don’t feel that way.”
Yracheta said there is a lack of policy in the United States to determine how the data is used, and that is why this research has not been conducted ethically.
Acknowledging group risk
Most scientific research uses the concept of informed consent. According to the NIH, informed consent is defined as “the process by which a volunteer confirms his or her willingness to participate in the research after having been informed of all aspects of the trial.”
In most cases of genomics research, consent is given on an individual level. However, Indigenous communities have said this violates tribal sovereignty and ignores the group risk involved with large-scale genomics projects.
“Group consensus is how we have governed ourselves for millennia, so it’s more culturally consistent for us to operate in a communitarian ethic than it is an individual ethic,” Tsosie said. “We have to acknowledge that this individual informed consent process is a very Western notion that is … acultural to our own and probably different in terms of cultural norms to other worldwide cultures.”
At the NIH, Dr. Sara Hull explained there are several committees and review boards who are responsible for ensuring that research by any of the institutes is being done ethically for the benefit of tribes.
“I am working on developing training programs and building our own capacity to recognize what some of the important ethical issues are and that are different from the research we do in our own research hospital when we’re going out and working with tribes,” she said. “And a big part of that is making sure first before we even look at a study, making sure that the researcher has appropriately engaged with the community (and) has gotten tribal approval.”
Hull added that access to data is determined on a study-by-study basis. There are different levels of data access, from complete open access to a small number of investigators. She said that although NIH policies generally encourage broad data-sharing, a data plan needs to be developed for every study.
There is a concern among Native communities that various biomarkers of individuals can be used against them in group settings. Some fear their sovereignty may be threatened if genetic information suggests they are “not Native enough” in the eyes of the government.
Tsosie advocates for community-based participatory research. Members of Native communities know best about their lifestyle and can more easily determine what risks will be good or bad for the collective group. By developing their own research infrastructure and running their own projects, they can ensure the data is being used ethically.
Keeping data close
Through the Native BioData Consortium, Indigenous researchers hope to keep their data on tribal lands so they have complete ownership of their information.
“Possession is nine-tenths of the law,” Yracheta said. “If the samples and the data are on the reservation, that is a geographic and legal boundary, so … outside researchers have to negotiate.”
With small-scale genomics projects, Indigenous communities do not have to share their genetic data with outside companies or researchers. They can choose how and when to share the data that best benefits their interests and meets community needs.
Approaches such as this put the community first and keep members involved in the scientific process rather than leaving them in the dark.
Yracheta said it is important to keep the data and its interpretation local.
“Data doesn’t exist in a vacuum,” he said. “You need somebody there (locally) to interpret and translate the research. And a lot of that interpretation, if it comes from non-Indigenous eyes, is going to be wrong.”
However, not all Indigenous people in the United States live on tribal land. In fact, the vast majority of them live in urban areas and can still be exploited by large research groups. Indigenous researchers recommend that there be a statement on intake forms that acknowledge the group risk inherently involved with underrepresented groups.
Brody and Hull said they are encouraging more training programs for Indigenous researchers to participate. There has been a shift in the research community in terms of how they view subjects.
“In science we’ve moved from thinking about subjects, which is a quite … pejorative way to think of who you’re working with, to participants and partners,” Brody said. “It’s taken a generation to do it, (but) it (is) actually valuable and respectful in the approach to research.”
Communication is key when it comes to ethical research, especially when dealing with something as personal as genetics. And Indigenous people have long been the target when they should be included in the conversation. Fox said this education goes both ways.
“But I think that non-Indigenous people have a lot to learn from us about sustainability, cultural sustainability, respect, love, honor (and) courage,” he said.
Emily Little is a health, environment, and science reporter at Medill. You can follow her on Twitter at @EmilyM_Little.