Nadine Caron was horrified by what she was hearing.
On a summer’s day in 2017, she was on a conference call discussing a potential project to improve genetic treatments for Indigenous children in Canada. Experts from around the world phoned in to help Caron and her colleagues to refine their grant application for an initiative called the Silent Genomes project.
But during that meeting, a nameless voice cut in to say, as Caron recalls: “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 began rattling off health issues — such as suicide, diabetes, alcoholism and drug use — that have higher rates among Indigenous populations than in non-Indigenous people in Canada, insinuating that Indigenous peoples have too many other problems to deal with before they can think about being on the cutting edge of precision medicine.
“I was appalled; I was hurt,” Caron says. “I was panicked that people in this space were thinking this.”
A cycle of stereotypes
Caron is a member of the Sagamok Anishnawbek First Nation and the first Indigenous woman to become a general surgeon in Canada. She currently practises at the University Hospital of Northern British Columbia in Prince George, Canada. As an outspoken advocate for Indigenous peoples’ rights in health care and research, she’s used to defending the validity of her work.
Caron has repeatedly heard physicians judge Indigenous patients, families and communities for their avoidance of the health-care system, which has, in part, led to high rates of health problems. But these medical professionals fail to acknowledge that Canada’s historical mistreatment of Indigenous peoples has bred this mistrust, she says. Therefore, it’s up to health-care providers to break the cycle of stereotypes, assumptions and racism.
Still, Caron was dismayed 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 non-profit organization that supports genomics research, had assembled the group of advisers. Sally Greenwood, vice-president of communications and societal engagement at Genome BC, stated in an e-mail that no one reported the comment at the time, and that the organization is committed to equity, diversity and inclusion. It would have launched an investigation had it known, Greenwood says. Genome BC co-funded the project in 2018.
“The comments were harsh,” says Laura Arbour, 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, “that was not the first time I’ve heard comments like that”.
The adviser’s arguments reflect a long history of non-Indigenous people telling Indigenous physicians, researchers, leaders, elders and community members what priorities they should have.
“It should be the other way around,” Caron says. Academic qualifications and years spent in a scientific role can never replace actual lived experience in one of these communities, she adds.
A focus on the future
This is one of the reasons why Caron has helped to found and now co-directs the Centre for Excellence in Indigenous Health at the University of British Columbia (UBC) in Vancouver. The centre, established in 2014, supports research into Indigenous health, prepares future medical professionals on how to provide culturally safe care and works to increase the number of Indigenous individuals in the health sciences.
Martin Schechter, an epidemiologist and founding co-director of the centre, calls Caron an amazing colleague and a “passionate advocate”.
Increasing the number of Indigenous health-care 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 attained a university degree, compared with 26% of non-Indigenous people in that age range, according to a 2016 Statistics Canada census. The census also shows that fewer 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 individuals have entered the medical field thanks to work led by Caron and others. And she envisions a future where it’s the norm to have health-care providers and scientists who are First Nations, Métis and Inuit.
Reflecting on that conference call five years ago, Caron says she’s curious to know who was questioning the Silent Genome project’s purpose. She and Arbour can’t be sure whether the anonymous adviser truly felt that way or was provoking the team to prepare them for the main review that determined the funding. But the bluntness and tone struck Caron as sincere.
Still she wonders. Perhaps if she had known the person behind that disembodied voice, she could have talked to them and redirected their views.
“Do I think I can change the world one person at a time? No,” she says. “But sometimes do I try? Yes.”