Years of collaboration blossom into MOU

Walpole Island First Nation announced the establishment of a memorandum of understanding (MOU) with the University of Western Ontario on June 25 making its five-year research relationship formal.
Years of collaborative health research initiated by the community has been a positive experience for all, and it began with concerns about the effects of pollutants in the St. Clair River.
Walpole Island is situated at the mouth of the river, downstream from Sarnia. The area around the city has been dubbed 'chemical valley' because of pollution released from 62 industrial facilities operating in the area. Just a few of those include Ontario Power Generation's Lambton Generating Station, Imperial Oil's Sarnia Refinery and Shell Canada's Sarnia Manufacturing Centre. Those facilities made it on the list of top 10 worst air polluters in Ontario in 2005.
Across the river on the American side are more polluters, including two large coal-fired power plants.
Dean Jacobs is the director of the Walpole Island First Nation's Heritage Centre. He said the industries have been in the area for the past 60 years, and understandably, community members were worried about the pollution effects because they drink the water and swim in it, as well as eat the fish.
Jacobs said the community approached Professor Jack Bend at the University of Western Ontario (department of Pathology) in 2004 to carry out a feasibility study for epidemiological assessment of the impact of toxic pollutants, specifically mercury.
He said Walpole Island citizens wanted a health study to find the causes of cancer in the community.
But a full-blown assessment could not be carried out because such a study requires a population of about 20,000 to be statistically significant. So the community partnered up with Attawapiskat in northern Ontario to round out the numbers required for the three-part study.
Jacobs said the first phase of the study required "blood sample collections from community volunteer participants and they were tested for consistent contaminants of organic pollutants."
Unfortunately, past relationships with health researchers working in Aboriginal communities has provided reason for caution and concern.
Often it wasn't known what was done with collected samples, or even if the data collected from First Nations people would be used for the intended study.
For instance, research went awry on the West Coast in the early 1980s, when a researcher collected blood samples from the Nuu-chah-nulth peoples for an arthritis study. The blood was later taken south of the border to the U.S. and then to Britain where the researcher built a reputation from the genetic research he did on the blood. The community never benefited from any research conducted on the blood, and never received results from the original arthritis story.
But that is not the case for residents of Walpole Island First Nation. The data collected in collaboration with the University of Western Ontario is owned by the community.
The property of data collection is covered under the community and university's ethical research guidelines.
"It's important that research is community driven," Jacobs said. "We are the principal investigators, not just the subjects."
Research proposals go through both the community and university. The approvals process is a fairly stringent one. Jacobs insists the community is always kept in the loop about research findings and data collection.
"We have been able to comfort our First Nation that raw data stays in the community, plus they have a say in how it's published."
Data is saved for 10 years, with participants' permission.
"The data is saved for that length of time in case there are new science techniques that we can use to test for the same original purpose," said Jacobs.
Professor Bend has assurances of his own. He does acknowledge there has been unethical research conducted in the country's past, and that it's against the law. There are guidelines that govern the use of secondary data.
"Information from one study cannot be used for another," he said. "There are very rigorous standards." Western has a Research Ethics Board with strict guidelines.
There are also now similar community research guidelines for Nuu-chah-nulth First Nations as a result of their experience with unethical study practises.
And on Manitoulin Island in Ontario, that nation established their Guidelines for Ethical Aboriginal Research (GEAR), which has been in place for the past four years.
Program Support Worker Lenore Manitowabi said the First Nations on Manitoulin Island wanted protocols in place to ensure community ownership over data collection, plus review of the studies. And they must be told how the studies will be used.
"We've always been researched," said Manitowabi, "but it can be very valuable, and research can be done in a way that is beneficial to the community."
She admits the committee for GEAR can be a little tougher for researchers to pitch their proposals to, because community members sitting on the committee are closer to the issues. So far, the committee has approved several research proposals in areas such as health, traditional medicine practices and youth.
Jacobs agrees communities can benefit from research. For Walpole Island, the Heritage Centre director said the tables have been turned, and they make sure research benefits the community.
"Research should be celebrated and we will find ways to incorporate knowledge into the classroom. We protect our research, but it is to be shared and cheered."
As for their pollution testing at Walpole Island, the blood tests scanned for mercury, and out of the 50 participants, none were at risk, Jacobs said.
Hair samples were also collected.
"The hair samples measured cortisol over the past three months [and] revealed a significantly higher level [for Walpole residents] than a community near London."
Participants will be re-tested in a few more months "since cortisol indicates stress, and our community suffers from 'chemo-phobia.' We don't know if the higher cortisol levels are because we're stressed about the chemicals from the pollution or the economic downturn."