The University of Guelph in southern Ontario is kicking off a new initiative to develop ways to protect Indigenous genetic data. This impactful effort is supported by funds from Genome Canada. The research team, led by Melissa Perreault, aims to develop a policy that protects Indigenous communities from potential exploitation in genetic research. This work is especially important given the history of abuses, such as the well-known case of the Havasupai community. Most importantly, it highlights the urgent need for ethical guidelines and restrictions on genetic research conducted in Indigenous populations.
The Havasupai population of Arizona became a vivid illustration of what can happen when genetic research goes wild. On the Blackfeet Nation, Arizona State University conducted and published studies using blood samples from community members without their knowledge or permission. This decision led to litigation that ended in an eventual $700,000 settlement. These types of events have created a lasting mistrust in Indigenous communities about how their genetic material will be treated.
A Focus on Ethical Guidelines
The initiative at the University of Guelph is being developed with the guidance of the First Nations Principles of OCAP—ownership, control, access, and possession. These principles, in tandem, develop an ethical framework for researchers. In addition to these concepts, they underscore the need to grant Indigenous Peoples the ability to control their data storage, interpretation, and dissemination.
As Jonathan Dewar, CEO of the First Nations Information Governance Centre, said when calling for these guidelines, “data harms are real. He recounts history as a painful legacy of trauma. This even extends to extractive research practices that take from Indigenous research communities without recompense, citation, or recognition. The OCAP principles empower Indigenous communities to engage or not engage. They provide them with a voice in deciding how their data is used.
In developing this policy, the research team intends to work with the University of Guelph’s Research Ethics Board to inform their development. For this reason, we expect the policy to be adopted within a two-year period, though that is still a very rough estimate. Once the policy is completed, the team will work closely with Dewar and the First Nations Information Governance Centre. They’re looking for ways to make sure the policy reflects the values and communities of Indigenous people.
The Game-Changing Role of Indigenous Communities
The Nuu-chah-nulth First Nations on British Columbia’s Vancouver Island recently completed a unique collaborative study. In fact, some of the world’s leading geneticists called the research breakthrough transformative. Their participation serves as an example of the important role Indigenous communities can play in advancing genetic research if ethical practices are prioritized.
Krystal Tsosie advocates for equity and justice in genomic research. She passionately advocates that Indigenous communities should have meaningful say in data decisions. She argues, “In order to have conversations around justice and genomic justice, we really need to talk about data equity.” We have to empower Indigenous communities, such as ours, to be able to make informed choices with their data. Her testimony in front of Congress underscores the important part that Indigenous voices must have in creating research policies that impact them.
Melissa Perreault agrees with this sentiment, noting that remote or isolated communities may experience an even sharper focus on their genetic data. Indigenous communities are often remote with many infrastructure needs, making access a serious barrier. This isolation inadvertently raises the risk of their DNA being misused for other purposes outside of the researchers’ initial goals, she notes.
The Need for Representation
Even with all the progress made in understanding genetic data, the disparity of Indigenous genomes represented in massive databases is overwhelmingly deficient. This underrepresentation is a result of, in part, a historical mistrust of genetic research as a result of research exploitative practices within Indigenous communities. As Tsosie explains, the collection of genetic samples from underrepresented populations—especially from Indigenous Peoples—amounts to an act of colonialism.
Researchers very much desire Indigenous DNA,” Perreault says. He drives the point home that without the right safeguards in place, these hard-fought resources could expire or be misallocated altogether. Scientific advancement and ethical responsibility are frequently at odds. To truly honor the spirit of reconciliation, we need to identify a path forward that respects Indigenous rights and sovereignty.
