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

Scientists who collect wastewater samples can access a variety of sensitive information.

At the University of Guelph in southern Ontario, researchers are working to protect the data.

Melissa Perreault is part of the research group working on a policy to better protect indigenous people from research exploitation, especially through wastewater sampling.

“The first thing I want to talk about is what a valuable wastewater study…but there are other things besides the wastewater [COVID-19],” Perreault told CBC News.

During the Covid-19 pandemic, public health authorities used wastewater sampling to track the spread of the virus in Canada.

Sensitive data found in wastewater, including human DNA and prescription drugs or illicit drugs, can also provide researchers with more information about the general health of the community.

“With the aboriginal community, this becomes a problem because they live in isolated communities for the most part. …There is a risk of exploitation to use human DNA for things other than what researchers originally intended to do,” Perreault said.

She said that if researchers decide to retain DNA samples for a long time, consent could become complicated.

“The wastewater samples are community samples, so there may be hundreds of them [or] Thousands of people contributed to this DNA in these samples. So the question becomes: “Who agrees?” Perreault said.

“What happens if the community leader changes if the community leader changes? Can one person in the community say no? These are all issues that aggravate the complexity of wastewater samples.”

This work was funded through a two-year grant from the Canadian Genome. According to its website, nonprofits are committed to “improving Canadian lives using genomics-based technologies.”

Perreault said the two-year schedule for completing the work is a rough estimate that could change. Some initial efforts will focus on understanding which indigenous communities they want to work with and get consent.

Lack of local DNA is a challenge for researchers

Precision medicine refers to the use of genomic data to predict which drug is best for everyone.

However, if references are missing, precision medicine cannot serve indigenous peoples, and the information gap between indigenous groups present around the world, including Canada.

“Indigenous DNA is highly coveted by researchers,” Perreault said.

“Aboriginals mostly live on reserves, so they are very close in most communities and are more isolated than other communities for thousands of years…researchers are higher,” she said.

The lack of representation of the indigenous genome in large databases reflects the general vigilance of this population, partly due to the errors in historical cases of genetic research.

Leading geneticists believe that game-changing research involves Nuu-Chah-Nulth Aboriginal peoples on Vancouver Island.

Nuu-Chah-Nulth has high frequency of rheumatoid arthritis. The team collected DNA samples from about half of the Aboriginal members to study the genetic basis of the disease.

No genetic determinants of rheumatoid arthritis were found, but this is not a big problem. The researchers sent DNA samples to an external facility for genetic ancestry studies without the knowledge or consent of the participants.

Krystal Tsosie, a geneticist and bioethicist at Vanderbilt University in Nashville, said it is colonialism to collect genetic samples and data from underpopulated, including indigenous peoples.

“If we really want to talk about justice and genomic justice, then we really have to talk about data equity and also give us data decisions to indigenous communities like us,” she said.

Another case study: Havasupai community in Arizona

Perreault said there are several recent examples of indigenous DNA used in research without permission.

One of the most notorious case studies, she said, is the Havasupai community in Arizona.

Between 1990 and 1994, researchers from Arizona State University went to the community to use blood samples for the diabetes program to determine the role of genetics in type 2 diabetes.

It was later discovered that their biological samples were used to challenge the community’s origin story and test the link between schizophrenia and inbreeding – a term that havasupai disagrees with.

The community sued Arizona State University for reasons they disagree with how to use blood samples, which violates medical secrecy. The community appeared in court for $700,000.

“[The Havasupai community] Probably one of the most famous samples,” Perreault said.

“But this is not something that happened in history. Now there is actually an exploitation of indigenous communities.”

Ethical Guide to Working with DNA

OCAP’s Aboriginal Principles (Ownership, Control, Access and Ownership) provide researchers with ethical guidelines for working with Aboriginal people who choose to share their data, including DNA.

The OCAP Guidelines say that Aboriginals alone should control how their data is stored, interpreted, used or shared. Perreault and her team hope to use OCAP as the basis for developing its policies, a specific foundation for wastewater management.

Jonathan Dewar is CEO of the First National Information Governance Center, which has developed the OCAP principles. He said indigenous peoples do have greater risks of research exploitation.

“History is a legacy of abuse, a legacy of excavating research practices that are taken from indigenous communities, not compensated for them, rather than citing them, erasing them,” he said.

“Fast forward to 2025, there is no change. … We have a federal government that uses the language of state-to-ethnic relations. The imbalance between Canada and its indigenous peoples and their governments remains a reality.”

Once the policy is established, Perreault and her team will contact Dewar and the Center for Indigenous Information Governance and the Research Ethics Committee at the University of Guelph to see if they can be formally adopted.