Nadine Caron was horrified by what she heard.
One summer day in 2017, she was on a conference call discussing a potential project to improve genetic treatment for Indigenous children in Canada. Experts from around the world called in to help Karen and her colleagues perfect their grant application for an initiative called the Silent Genomes project.
But during that meeting, an unnamed voice stepped in to say, as Karen recalled, “I don’t understand why you’re spending so much money and so much time applying for this grant when your people are killing themselves.”
This person started talking about health problems – such as suicide, diabetes, alcoholism and drug use – being higher among Indigenous people than non-Indigenous people in Canada, implying that Indigenous people have too many other problems to deal with to handle before they can think about being on the cutting edge of precision medicine.
“I was terrified; I was hurt,” Karen says. “I was panicked that people in this space thought that.”
A cycle of stereotypes
Caron is a member of the Sagamok Anishnaubek First Nation and the first Indigenous woman to become a surgeon general in Canada. She currently practices at the University Hospital of Northern British Columbia in Prince George, Canada. As an outspoken advocate for Indigenous rights in health and research, she is used to defending the validity of her work.
Caron has repeatedly heard doctors sue patients, families and local communities for avoiding the health care system, which in part has led to high rates of health problems. But what these medical professionals fail to recognize is that Canada’s historical mistreatment of Indigenous peoples has given rise to this mistrust, she says. Therefore, it is up to health care providers to break the cycle of stereotypes, assumptions, and racism.
Still, Caron was horrified to hear the discriminatory remarks coming from a project adviser who presumably wanted the effort to succeed.
Genome British Columbia (Genome BC), a Vancouver-based not-for-profit organization that supports genomic research, assembled the panel of advisors. Sally Greenwood, vice president of communications and public engagement at Genome BC, said in an email that no one reported the comment at the time and that the organization is committed to equity, diversity and inclusion. He would have launched an investigation if he had known, Greenwood says. Genome BC co-funded the project in 2018.
“The comments were harsh,” said Laura Arber, a medical geneticist at the University of Victoria in Canada who leads the Silent Genomes Project and was on the call at the time. But, she adds, “it wasn’t the first time I’ve heard comments like that.”
The counsel’s arguments reflect a long history of non-Indigenous people telling Indigenous doctors, researchers, leaders, elders and community members what their priorities should be.
“It should be the other way around,” Caron says. Academic qualifications and years spent in a research role can never replace actual experience in one of these communities, she adds.
Focus on the future
That’s one reason Caron helped found and now directs the Center for Excellence in Indigenous Health at the University of British Columbia (UBC) in Vancouver. The center, established in 2014, supports Indigenous health research, prepares future health professionals in how to provide culturally safe care and works to increase the number of Indigenous people in the health sciences.
Martin Schechter, an epidemiologist and co-founder of the center, called Caron an amazing colleague and “passionate advocate.”
Increasing the number of Indigenous health professionals is especially important to Caron, who in 1997 became the first First Nations woman to graduate from UBC’s medical school.
In Canada, only 10% of people over the age of 24 who identify as Indigenous have earned a university degree, compared to 26% of non-Indigenous people in that age group, according to a 2016 Statistics Canada census. The Census also shows that less than 1% of specialists and general practitioners in Canada identify as Indigenous, even though the Indigenous community makes up almost 5% of the country’s population.
Today, more indigenous people have entered the medical field thanks to the work led by Caron and others. And she envisions a future where it is the norm to have health care providers and scientists who are First Nations, Métis and Inuit.
Reflecting on that conference call five years ago, Karen says she’s curious to know who questioned the purpose of the Silent Genome Project. She and Arbor can’t be sure if the anonymous adviser really felt that way or if he was provoking the team to prepare them for the major review that determined the funding. But the frankness and the tone struck Caron as genuine.
Still, she wonders. Maybe if he knew the person behind that disembodied voice, he would talk to them and redirect their views.
“Do I think I can change the world one person at a time? No, she says. “But sometimes I try? Yes.”