In a unique collaboration, University of Guelph researchers Drs. Melissa Perreault and Lawrence Goodridge are combining their areas of expertise in Indigenous scholarship and wastewater monitoring to inform a new Indigenous-specific policy that balances public health monitoring with privacy rights on First Nations.
Perreault, a neuroscientist in the Department of Biomedical Sciences, and Goodridge, professor in the Department of Food Science and director of the Canadian Research Institute for Food Safety, advocate for these changes in a new paper recently published in Genomic Psychiatry.
The goal is to develop a policy, or a set of guiding principles, specific to Canada, but that can be adapted globally. “This isn’t just a problem in Canada,” Perreault says. “It is a problem globally.”
What is wastewater epidemiology?
Wastewater-based surveillance and epidemiology is a public health approach to analyzing biological and chemical markers to monitor the health of communities. It was first developed to determine illicit drug use.
However, it has more recently been used for disease detection and tracking during the COVID-19 pandemic, helping public health officials mitigate the spread of infectious illness. As well, it can be used to assess other things in wastewater like environmental pollutants such as pesticides or pharmaceuticals.
“It also contains a lot of human DNA,” Goodridge says.
This means genomic analysis of such wastewater samples can provide sensitive data about genetics, ancestry, health predispositions and disease prevalence within a population. In Indigenous communities, there are significant privacy and ethical concerns about biological data collection.
A history of colonialism and research exploitation
“There is a history of exploitation when it comes to Indigenous data that can reinforce stereotypes or stigma,” Perreault says. “Colonialism still exists in research. Researchers design their studies without community consultation, there is no cultural humility, and they use Indigenous data in ways that are not consented to.”
The paper cites examples, one in which researchers collected blood samples from an American Indigenous tribe in Arizona to assess for a genetic link to diabetes (which they did not find). Unbeknownst to the tribe, researchers then continued to assess the samples for schizophrenia without informing the community or getting its consent.
That second, or third-hand, use of genomic data is one example of why a policy is needed; and wastewater sampling from Indigenous communities is new. During the pandemic, many First Nations had to have their wastewater collected and sent to outside academic government or commercial labs to be tested.
“Since research ethics board approval is not currently required for wastewater analysis, people can take those samples and do whatever they want with them,” Goodridge says. “Many researchers biobanked wastewater samples obtained during the pandemic for future analysis of infectious diseases. You may have worked with the First Nation to collect the samples, and the initial study may have been done with their approval, but what about five years from now when you want to reanalyze those samples for a different study?
“Are you going back to that community to ask for consent again?”
Indigenous genomic data is highly coveted, Perreault explains, because of an isolated genetic history. The paper cites another example from the 1980s, in which researchers received blood samples from the Nuu-chah-nulth on Vancouver Island to learn if there were genetic links to the high rates of rheumatoid arthritis in the community. They were not successful and took the samples to reuse in genomic ancestry research without the knowledge or consent of the tribe, not returning them until two decades later. Genomic ancestry studies can be of particular concern as there is often a disconnect between Indigenous origin stories and Western research.
The First Nations Principles of OCAP
Currently, First Nations have ownership, control, access and possession of their data, under The First Nations Principles of OCAP. Perreault says this new policy would build on that foundation. OCAP principles were created to be specific to the individual, Goodridge points out, whereas this framework would focus on communities.
The framework will cover respect transparency, community engagement, consent, same storage and data governance. Broken down, this means researchers should be designing their research questions, acquiring data and sharing their findings in full partnership with Indigenous communities, while remaining cognizant of each community’s traditional knowledge, customs and world views. A one-size-fits-all approach here is not applicable.
“There is an opportunity here for Canada to be a leader in this kind of research,” Goodridge says, and for empowering future Indigenous scholars to lead this kind of work. “As genomic technology advances and the science increases, this supports epidemiological research advancement and the protection of Indigenous communities’ autonomy in the age of genomic surveillance.”
This work is supported by a two-year grant from Genome Canada.