A Healthcare Lens on Canada’s first Truth and Reconciliation Day - hindsight and foresight

The?National Day of Truth and Reconciliation in Canada?is intended to give time to reflect on the painful legacy of the residential school system, and to honour survivors, to never forget the children who died while attending the schools nor the families and communities affected by the residential school system.?

I don't think we can ever know the numbers but according to Amnesty International's communication to it's members today:

"An estimated 150,000 children were forcibly removed from their families and communities, transferred to residential schools, sometimes thousands of kilometres away from their homes. They endured horrific conditions of physical and sexual abuse, unsanitary conditions resulting in disease, malnutrition and starvation, forced labour, and indoctrination out of their identity, languages and cultures. Thousands of children never made it home.

From 1831 to 1996, there were 140 federally run residential schools across the country. For years, survivors and communities spoke out about the intergenerational trauma caused by these institutions: from the trauma inflicted on these children within the system, their loss of language, community, and culture and ways of being, to the ongoing forcible removal and assimilation under the child welfare system.

Yesterday, in an important step towards justice for Indigenous children, the Federal Court upheld a landmark Canadian Human Rights Tribunal ruling ordering the federal government to compensate First Nations children and their families."

I’m in the life sciences industry, it is fast paced and yet slow in the same breath. The apparent slowness can be explained as this is a regulated industry. When conducting clinical trials, we have the fundamental right for patients of informed consent across the globe, an activity that patients undertake before they enroll in a clinical trial, patients can also revoke their consent at any time too. My interest in clinical research has always had a lens of upholding patients’ rights through safe and effective medicine and treatments – in my small space this is a foundational aspect for me.

I’ve also always had a deep passion of history and an interest with what lens the storyteller shares a particular narrative, I credit my secondary school teacher for this education in my very first history lesson at school for that lens. I also have experienced an inaccurate narrative of people from the Sikh faith, a community to which I belong to, where censorship and inaccurate storytelling is rife in many spaces. I gravitate towards the unheard voices in all the spaces that I am in.

I put the following thoughts down with respect, sharing my own learnings today.

Hindsight

Through my learnings for this day where I have taken some time to reflect and learn, I wanted to learn about the past. I discovered how Canada’s food guide had some dark history that most people would rather forget. I learned how experiments were conducted on Indigenous children that had been snatched from the arms of their parents from a young age into the residential school systems, where they were plucked away from their families, their culture, their history, their heritage.

In short, the Canadian government had conducted nutritional experiments on Indigenous children in residential schools. The tests were apparently undertaken without the informed consent or knowledge of the Indigenous peoples involved.?

In the 1940’s, a medical doctor and biochemist Lionell Pett led the federal Nutrition Services division, he would later be instrumental in the development of the Food Guide in Canada. This division would start the setting of nutritional standards and policy. Pett oversaw a series of nutritional experiments in Indigenous communities including a long-term study in residential schools using students as subjects.?These experiments included a control arm of these studies with children that were known to be malnourished in the school system receiving no changes to their diets. In a CBC piece earlier this year, it was stated that:

“The nutritional experiments were part of a larger series of "investigations" into the diets of Indigenous people?during this period, what Mosby described as the federal government's "social experiment" to transform Indigenous people's?diets.?“The most important connection between the nutrition experiments and Canada's Food Guide is Lionel Pett,” said Mosby”

?"They took the extremely racist idea that Indigenous peoples were somehow racially inferior, and they suggested that might have had to do with nutrition. And so they took it upon themselves to solve this 'Indian problem' through expert intervention into Indigenous people's diets."

"At the heart of this was this …. willful attempt to ignore the actual cause of the changes in Indigenous people's diets which was colonialism, which was the Indian Act, which was the forced removal of Indigenous people from their lands, the limits placed on Indigenous peoples' livelihoods through regulations on hunting and trapping, through the effects of residential schools —?all of these different elements of Canadian colonialism, which led to problems with Indigenous people's?diets."

"Pett used the opportunity of hungry kids in residential schools …?who had no choice in what they were going to eat and whose parents had no choice in what they were going to eat …?to attempt to answer a series of questions that were of interest to him professionally and scientifically."?

"You can draw a direct line between the types of experiments that were being done in residential schools and these larger debates about how they should structure the food guide."?

Historian Ian Mosby wrote a publication in 2013: Administering Colonial Science: Nutrition Research and Human Biomedical Experimentation in Aboriginal Communities and Residential Schools, 1942-1952. He also went onto co-author another publication in 2017: “Hunger was never absent”: How residential school diets shaped current patterns of diabetes among Indigenous peoples in Canada"

I cannot ever do justice to telling these truths but I offer the links that I have come across as potential readings for those that wish to learn more about something that should never ever be forgotten.

Foresight

I then went onwards to learn about another CBC piece published yesterday and how indigenous scientists are using biomedical research to seek genomic justice. This made me think about clinical research and how we all talk about inclusion in research.

Dr Nadine Caron, co-director of the Centre for Excellence in Indigenous Health?at the University of British Columbia?in Vancouver, also developing a First Nations biobank reflected that "the time for research done by Indigenous scientists that prioritizes?Indigenous communities' needs is long overdue"

"There's been too much of what we call 'helicopter research' or 'vampire research,' where researchers come into a community with a question that isn't even a priority for the communities. [They] come in, take what they need and leave and don't even share the results with the community — let alone the potential benefits,"?

I've heard similar sentiments across the spectrum of different populations.

We must do better in the industry I am in. We must be accountable to the people as it is the people we serve. Already there is a disconnect between the industry and public health, we have to play our part positively. The piece also reflected on data sovereignty and surveillance capitalism and that has stuck with me today and beyond. Let me expand.

Data Sovereignty:

Joseph Yracheta, is a biomedical health disparities researcher and also co-founder of the Native BioData Consortium. Joseph comments that "one of the biggest concerns is ownership of not only biological samples?but the data derived from them"

Other well renowned experts in the piece are observing "a troubling trend where?biological and genetic data obtained through open-access platforms is becoming commodified".

For me, this is a pivotal moment where people will want data sovereignty. With the digital genome market reported to be expected to be worth $50.4 billion by 2025, I do expect further initiatives from people understanding that there needs to be a change.

Another stop in my tracks moment was when there was a comment in the piece about

"changing laws and research practices so that commitments to diversity, inclusion and equity are fully realized, particularly when it comes to data ownership"

"If we give our data, and nothing on the other side is changed, there's no way that the benefits are going to come back to us and more likely it's going to be exploitative," he said.

"So just like we were exploited for land and crops, medicines and gold and oil, we will be exploited for the biological treasures that are in our genome."

I suspect more people will look at the notion of surveillance capitalism with the healthcare lens and that is not a bad thing. I think countries will need to think about this too.

Insight

Today has made me think. About the past, the present and where we are going. I will continue on my journey of learning and listening and taking action, not just as a professional in the clinical research industry but because I believe in the power of humanity.

I would like to acknowledge the shared, unceded traditional territory of the Katzie, Semiahmoo, Kwantlen and other Coast Salish Peoples on which I work, play and learn.

Resources:

A national Indian Residential School Crisis Line has been set up to provide support for former students and those affected. People can access emotional and crisis referral services by calling the 24-hour national crisis line: 1-866-925-4419.

The National Centre for Truth and Reconciliation is hosting a free, virtual week of events called Truth and Reconciliation Week It runs Sept. 27-Oct. 1, and will include videos from Indigenous storytellers, conversations with Indigenous elders, as well as artistic and cultural performances. There will be recordings afterwards too.

Have a read of the 94 Calls to Action that were outlined by the Truth and Reconciliation Commission of Canada in 2015 as a means to redress the legacy of Canada’s Indian Residential Schools and advance the process of Canadian reconciliation. It is just a start and long overdue but it is a start. ?