Indigenous data sovereignty shakes up research

In the COVID-19 era, tribal nations want research in service of their people.

 

As U.S. government scientists work to understand how COVID-19 affects the human body, tribal nations are still struggling with the impacts of the federal government’s inadequate response to the pandemic. Now, through a National Institutes of Health program called “All of Us,” tribal nations across Indian Country are pushing federal scientists to conduct disease research that serves Indigenous peoples in a meaningful way. Developing research practices in accordance with tribal consultation takes time, however, meaning that for now, tribal citizens are missing out on the program’s coronavirus antibody testing.

The All of Us study aims to collect, sequence and catalog DNA representative of the United States’ diverse communities. This vast project will enable research such as Alzheimer’s, diabetes and autoimmune diseases from across the country. But tribal nations are concerned about the ownership and control of this data, which can affect a number of things: patents and intellectual property rights, the privacy of tribes, future research and even access to basic information and health care.

“We’re concerned about access to data as well as release of data without tribal permission,” said Dr. Stephanie Russo (Ahtna-Native Village of Kluti-Kaah), University of Arizona public health professor. “What the pandemic has shed a light on is the need for tribes to have access to external data.”

A production associate sorts through stacks of petri dishes of DNA samples. A nationwide DNA study currently will not test tribal citizens until tribes have been consulted about sharing citizens’ data.
Aric Crabb/The Mercury News via Getty Images

The coronavirus pandemic has given the Indigenous data sovereignty movement a new sense of urgency. As pharmaceutical companies, researchers and governments scramble to create COVID-19 tests and vaccines, many tribal leaders and Indigenous data and public health experts are wary of participating in research that may have little benefit for their communities.

The Indigenous data sovereignty movement emerged in 2015, when Indigenous researchers convened in Australia to discuss research on Native peoples and Indigenous rights under the United Nations Declaration on the Rights of Indigenous Peoples. They concluded that Indigenous nations retain ownership over their citizens’ data, as well as the power to decide how that data is used. All this made news earlier this year, when the U.S. was widely criticized for a major data breach that leaked the financial data of tribal nations that had submitted applications for COVID-19 relief. 

What’s more, in the past, medical researchers have stigmatized and harmed Indigenous communities. In some cases, they did not report their findings to the tribes who participated. A 1979 study on an Inupiat community in Alaska resulted in widespread publicity on the community’s alcohol use, encouraging harmful stereotypes. Researchers who took blood samples from the Havasupai Tribe in 1989 conducted a diabetes study and allowed other researchers to access the samples without the tribe’s knowledge or consent. The federal government’s past use of ancestry, such as blood quantum, to terminate tribal nations and limit tribal sovereignty, means there is little trust today for government-funded genetic research. This is why tribes insist on sharing ownership of the data collected by All of Us. It would empower them to have input regarding future research that makes use of Indigenous data. 

“Understand: Data is a resource.”

“Understand: Data is a resource,” said Keolu Fox (Kanaka ‘Ōiwi), assistant professor of anthropology at University of California-San Diego who studies genome science and Indigenous communities. Fox has argued that unrestricted access to genome data by state governments and pharmaceutical companies is a threat to tribal sovereignty and may have little direct benefit aside from individual test results — meaning tribes will likely not receive subsidized medications, intellectual property rights or royalties in return for their data. During a May National Institutes of Health tribal consultation, NIH researchers recognized the minimal benefits of Indigenous participation, as Fox noted, stating that the primary gain would be those individual test results.

After tribes and Indigenous experts began voicing their concerns about All of Us over a year ago, NIH prohibited researchers from collecting data on tribal lands. It has also halted release of data results from participants who identify as American Indian or Alaskan Native. The researchers also agreed not to publish tribal affiliations of participants without the consent of the tribal nations. This means that All of Us is currently prohibited from studying tribal citizens — at least until it finishes consulting with tribes — even for coronavirus antibody testing.  

Given the tragic realities of this pandemic, health experts say addressing past ethical concerns and securing data rights in federal research institutions is crucial for both NIH and tribal nations to propel disease testing and research. Russo, who has been watching NIH’s tribal meetings closely, says institutions like NIH need to build better relationships and partnerships with tribal nations to help repair the damage of history’s mistakes. “The onus is on researchers and institutions, which fund them and support them, to change practices.”

Kalen Goodluck is a contributing editor at High Country News. Email him at [email protected] or submit a letter to the editor.

High Country News Classifieds
  • MANAGER PERMACULTURE LANDSCAPE CONTRACTOR
    Permaculture / Landscape Company Manager / Site Lead Red Ant Works, Inc. - 20+ year landscape construction and horticultural care company seeks manager and site...
  • CANYONLANDS FIELD INSTITUTE
    Field seminars for adults in natural and human history of the Colorado Plateau with lodge, river trip and base camp options. Small groups, guest experts.
  • COMMUNICATIONS MANAGER
    San Juan Citizens Alliance is looking for a passionate, dynamic, organized, and technology-savvy communications professional to help grow our membership and presence in the Four...
  • ENERGY AND CLIMATE PROGRAM ASSOCIATE
    San Juan Citizens Alliance seeks an Energy and Climate Program Associate to focus on public outreach, education and organizing to advance campaigns to mitigate climate...
  • REAL ESTATE SPECIALIST
    This position provides professional real estate services and is responsible for managing and completing real estate projects utilizing a project management database that is designed...
  • WILDFIRE MITIGATION SPECIALIST
    The Wildfire Mitigation Specialist is responsible for delivering wildfire risk mitigation information, recommendations and programmatic resources to wildland urban interface homeowners, community members and partners....
  • DEVELOPMENT POSITIONS
    Thorne Nature Experience is hiring for a Development Director and Senior Individual Giving Manager. Individuals will work collaboratively with Thorne's Executive Director to develop and...
  • SENIOR PROGRAM MANAGER, LANDSCAPE CONSERVATION & ENERGY
    The National Parks Conservation Association, a 100-year-old nonprofit advocacy organization and the nation's leading voice for national parks seeks a Senior Program Manager, Landscape Conservation...
  • BACKCOUNTRY AND FRONTCOUNTRY STEWARDSHIP CREW MEMBERS
    The San Juan Mountains Association (SJMA) is hiring a crew of ambassadors to work in partnership with the U.S. Forest Service to educate visitors on...
  • EXECUTIVE DIRECTOR, NATURAL HISTORY INSTITUTE
    The Executive Director is the chief executive officer of the Natural History Institute (NHI). The Executive Director has broad authority to lead and manage the...
  • EXECUTIVE DIRECTOR AT FRIENDS OF CEDAR MESA
    - The Land, History, and People of the Bears Ears Region - The Bears Ears and Cedar Mesa region is one of the most beautiful,...
  • SENIOR DEVELOPMENT ASSOCIATE
    Greater Yellowstone Coalition seeks a Senior Development Associate to coordinate the organization's individual giving program. The position description is available at http://greateryellowstone.org/careers Please email a...
  • TRAIL CREW TECHNICAL ADVISORS
    SEEKING TALENTED TRAIL CREWLEADERS The Pacific Crest Trail Association, headquartered in Sacramento, California ,is dedicated to protecting, preserving and promoting the Pacific Crest National Scenic...
  • ENDANGERED SPECIES POLICY ADVOCATE
    Are you a Guardian for wildlife, great and small, across the West? WildEarth Guardians (Guardians) seeks a full-time Endangered Species Policy Advocate (Advocate) for the...
  • WESTERN NATIVE SEED
    Native plant seeds for the Western US. Trees, shrubs, grasses, wildflowers and regional mixes. Call or email for free price list. 719-942-3935. [email protected] or visit...
  • ASSOCIATE PROGRAM MANAGER - GRANTS & CONTRACTS
    ORGANIZATION BACKGROUND Parks California is an ambitious new organization working to ensure that our state's parks thrive. From redwood groves and desert springs to lighthouses...
  • WILDLANDS ATTORNEY- SOUTHERN UTAH WILDERNESS ALLIANCE
    Immediate Opening-Wildlands Attorney The Southern Utah Wilderness Alliance (SUWA) has an immediate opening for a full-time Wildlands Attorney. Interested applicants should email a cover letter,...
  • STREAM RESTORATION PROJECT MANAGER
    The Clark Fork Coalition seeks a Stream Restoration Project Manager to develop and manage a suite of restoration projects near Missoula, MT. The Stream Restoration...
  • THE LAND DESK: A PUBLIC LANDS NEWSLETTER
    Western lands and communities--in context--delivered to your inbox 3x/week. From award-winning journalist and HCN contributor Jonathan P. Thompson. $6/month; $60/year.
  • CONSERVATIONIST? IRRIGABLE LAND?
    Stellar seed-saving NGO is available to serious partner. Package must include financial support. Details: http://seeds.ojaidigital.net.