Scientists collecting wastewater samples gain access to a variety of sensitive information.
At the University of Guelph in southern Ontario, researchers are working to protect that data.
Melissa Perreault is part of the research team focused on developing a policy to better protect Indigenous people from research exploitation, specifically through wastewater sampling.
“I want to start by saying how valuable wastewater research is … but there are other things in wastewater besides [COVID-19],” Perreault told CBC News.
During the COVID-19 pandemic, public health departments used wastewater sampling to keep track of the spread of the virus across Canada.
The sensitive data found in wastewater — including human DNA and prescribed or illicit drugs — can also give researchers more information about the general health of the community.
“With Indigenous communities, this becomes a problem because they live in isolated communities for the most part…. There’s a risk of exploitation of using that human DNA for things other than what the researchers originally intended to do,” Perreault said.
She said consent can become complicated if researchers decide to hold on to DNA samples for a long time.
“Wastewater samples are community samples, so there are potentially hundreds [or] thousands of people who have contributed to that DNA in those samples. So the question becomes: ‘Who gives consent for that?'” Perreault said.
“If it’s community leaders, what happens if the community leaders change? Can one person in a community say no? These are all questions that add on to the complexity of wastewater samples.”
The work is being funded through a two-year grant by Genome Canada. The non-profit group works to “use genomics-based technologies to improve the lives of Canadians,” according to its website.
The two-year timeline to finish the work is a rough estimate and could change, Perreault said. Some of the preliminary efforts will focus on understanding which Indigenous communities they would like to work with and obtaining consent.
Precision medicine refers to the use of genomic data to predict which drug will work best for each person.
But precision medicine cannot serve Indigenous Peoples if their reference data is missing, and an information gap for Indigenous groups exists around the world, including in Canada.
“Indigenous DNA is highly coveted by researchers,” Perreault said.
“First Nations people mostly live on reserves, so they’re very tight-knit communities, for the most part, more isolated than other communities for millennia…. The risk of exploitation of Indigenous Peoples by researchers is higher,” she said.
The lack of representation of Indigenous genomes in large databases reflects a general wariness in that group caused, in part, by historical cases of genetic research gone wrong.
One study considered by leading geneticists as a game-changer involved the Nuu-chah-nulth First Nations on Vancouver Island.
The Nuu-chah-nulth have a high frequency of rheumatoid arthritis. The research team collected DNA samples from approximately half of the First Nations members to study the genetic basis for the disorder.
The genetic determinants of rheumatoid arthritis weren’t found, but that wasn’t the big problem. Researchers sent the DNA samples to external facilities for genetic ancestry studies without the knowledge or consent of the participants.
Krystal Tsosie, a geneticist and bioethicist at Vanderbilt University in Nashville, said the gathering of genetic samples and data from underrepresented populations, including Indigenous Peoples, is colonialism.
“If we really want to talk about justice and genomic justice, then we really have to talk about data equity, and also empowering data decisions from Indigenous communities like ours,” she said.
Perreault said there are several examples in recent history of Indigenous DNA being used in research without permission.
She said one of the most infamous case studies is of the Havasupai community in Arizona.
Between 1990 and 1994, researchers from Arizona State University went to that community to take blood samples to be used in a diabetes project, with the goal of determining how genetics play a role in Type 2 diabetes.
It was later discovered their biological samples were used to challenge the community’s origin story and test the link between schizophrenia and inbreeding — terms not agreed to by the Havasupai.
The community sued Arizona State University on the grounds they did not consent to how their blood samples were used and it was a violation of medical confidentiality. The community settled out of court for $700,000.
“[The Havasupai community] is probably one of the more famous samples,” Perreault said.
“But this is not something that is only happening historically. Exploitation of Indigenous communities is actually happening now.”
The First Nations Principles of OCAP (ownership, control, access and possession) gives researchers an ethical guide to working with First Nations that choose to share their data, including DNA.
The OCAP guideline says First Nations alone should have control over how their data is stored, interpreted, used or shared. Perreault and her team are hoping to use OCAP as a foundation to build their policy, which is specific to wastewater management.
Jonathan Dewar is CEO of the First Nations Information Governance Centre, which developed the OCAP principles. He said it’s true that Indigenous Peoples are at a greater risk of research exploitation.
“The history is a legacy of abuse, a legacy of extractive research practices, taking from Indigenous communities, not compensating them, not citing them, erasing them,” he said.
“Fast forward to 2025 and that hasn’t changed…. We have a federal government that uses the language of nation-to-nation relationship. The imbalance between Canada and Indigenous Peoples, and their governments, is still very much the prevailing reality.”
After the policy is developed, Perreault and her team will reach out to Dewar and the First Nations Information Governance Centre, as well as the University of Guelph’s Research Ethics Board, to see if they can adopt it officially.
