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Indigenous DNA in wastewater is vulnerable to exploitation, Guelph, Ont., researchers say

At the University of Guelph in southern Ontario, a team of researchers is tackling the issue of protecting sensitive information collected through wastewater sampling. Melissa Perreault, a member of the research team, is leading the charge to develop a policy that will safeguard Indigenous people from potential exploitation in research, specifically in the context of wastewater sampling.

While wastewater research has proven to be valuable, it is important to recognize that wastewater contains more than just COVID-19 data. Human DNA and traces of prescribed or illicit drugs are also present in wastewater samples, providing researchers with insights into the overall health of a community. However, the issue arises when this data is used in ways that were not initially intended, potentially leading to exploitation of Indigenous communities.

Perreault highlights the complexities surrounding consent when it comes to holding onto DNA samples for extended periods of time. Wastewater samples are community samples, meaning that the DNA of hundreds or even thousands of individuals may be present. This raises questions about who has the authority to give consent on behalf of the community, and what happens if community leaders change or if a single individual objects.

Funded by Genome Canada, the research team at the University of Guelph is embarking on a two-year project to address these ethical concerns. One of the primary challenges they face is the lack of Indigenous DNA in large databases, hindering the progress of precision medicine initiatives that rely on genomic data. Indigenous communities, often living in isolated reserves, are at a higher risk of exploitation due to their unique genetic makeup and historical mistrust of research practices.

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Krystal Tsosie, a geneticist and bioethicist, emphasizes the importance of empowering Indigenous communities to make decisions about their genetic data. She argues that gathering genetic samples without consent is a form of colonialism and stresses the need for data equity and justice in genomics research.

Perreault points to historical cases of research exploitation, such as the infamous Havasupai community case in Arizona, where DNA samples were used without permission for purposes unrelated to the original study. To prevent such incidents from reoccurring, the research team is looking to the First Nations Principles of OCAP (ownership, control, access, and possession) as a guide for developing their policy on wastewater management.

Jonathan Dewar, CEO of the First Nations Information Governance Centre, underscores the ongoing imbalance between Canada and Indigenous Peoples in research practices. He emphasizes the need for researchers to respect Indigenous sovereignty and ensure that data is handled ethically and in accordance with Indigenous principles.

As the research team at the University of Guelph moves forward with their policy development, they are committed to collaborating with Indigenous organizations and research ethics boards to ensure that Indigenous communities are protected from exploitation in wastewater research. By centering Indigenous voices and values in their work, the team hopes to set a new standard for ethical research practices in genomic data collection.

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