LITTLE CURRENT—The organizers of an all day community engagement session on biological sampling to be held at the Aundeck Omni Kaning Community Centre (band office) on Thursday, January 28 are inviting all interested community/band members to participate and provide their input.
Lorrilee McGregor, chair for the Manitoulin Anishinabek Research Review Committee (MARRC), explained to The Expositor what biological sampling entails and why MARRC is holding the consultation sessions.
First Nations communities have been the focus of intense research for many years, but most of those studies have left the communities where they were conducted wondering what had happened or what the results of those studies entailed.
“There was really very little in the way of information that came back to the communities,” said Ms. McGregor. Essentially, the researchers would come, study, collect their data and leave behind a vacuum of information for community members.
MARRC was formed in 2001 to provide guidelines for researchers collecting data from First Nations communities. “Initially, when we were designing the guidelines, it took a year or so of discussions,” she recalled. “But those guidelines didn’t address biological sampling.”
The current MARRC guidelines have largely been successful, and the relationships between researchers and the communities have improved greatly since their inception, noted Ms. McGregor.
But the time has come to address the issues surrounding biological sampling.
“There are many samples (such as hair, blood or skin samples) that are taken for medical purposes,” noted Ms. McGregor. “Basically what we are interested in here are biological samples taken for research purposes.” While there are ethical and privacy guidelines that govern medical samples fairly well, when it comes to guidelines for samples taken for research purposes, there is really very little in place.
“This came to our attention when we were approached by a research group seeking guidance for their project,” said Ms. McGregor. “We realized that the guidelines did not address biological sampling.”
A literature search conducted by MARRC soon made it clear that the issue of guidelines for biological sampling isn’t just a local issue. “There really isn’t anything out there to speak of,” said Ms. McGregor. “We only found one community that had anything at all.”
With the growth of research projects that seek to target medications to specific groupings through DNA and other biological specifics of populations and individuals, that is a line of research that is likely to grow.
On the privacy front, there are concerns that impact First Nations communities. “Because our communities are so small, there are concerns that would not be an issue for larger communities,” she noted, giving a hypothetical example involving Whitefish River First Nation (WRFN). “Say you are conducting a study of cervical cancer among women between 45 and 55 that found 50 percent of the women had cervical cancer,” she said. “In WRFN there might be 15 women in that cohort. That is the kind of things that we look at.”
The consultation is seeking input beyond issues of privacy and disclosure, however. “We need to address the cultural and spiritual aspects as well,” noted Ms. McGregor, citing the example of groups for whom hair is sacred. “What is done with the samples after the research is completed,” she asked.
In order to gain a broad range of inputs, MARRC has invited local community leadership, chiefs and representatives of councils, health leaders including health directors, as well as elders groups and interested community members.
“We are hoping for a good dialogue,” said Ms. McGregor.
Noojmowin-Teg Health Services has been acting as host for MARRC’s work, noted Ms. McGregor.
