By Neil Armstrong
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| Photo contributed. Left to right: Dr. Juliet Daniel, Dr. Loydie Jerome-Majewska, Dr. Upton Allen and Dr. OmiSoore Dryden |
For Dr. Juliet Daniel, a Professor and Cancer Biologist in the Department of Biology at McMaster University in Hamilton, and a cancer survivor, the genCARE Project, a national groundbreaking initiative, is a “10-year dream that has finally come true.”
She is one of its co-leaders; the others are Dr. Upton Allen, Professor of Paediatrics at The Hospital for Sick Children (SickKids), University of Toronto; Dr. OmiSoore Dryden, Tier 1 Canada Research Chair in Black Health Studies at Dalhousie University in Halifax; and Dr. Loydie Jerome-Majewska, an expert in developmental genetics and congenital disorders at McGill University in Montreal.
The genCARE Project aims to provide genomic evidence for precision medicine for selected chronic diseases among Black peoples in Canada. This will help to create better healthcare that meets the needs of Black Canadians.
A genome is an organism's complete set of DNA. The researchers plan to sequence over 10,000 genomes from Black peoples across Canada, starting with Ontario, Nova Scotia and Quebec.
Dr. Daniel says the dream started when she first met Leila Springer, one of the co-founders of The Olive Branch of Hope—an organization that supports women of African-Caribbean heritage in their breast cancer journey-- in 2015. She has been working with them ever since, doing breast cancer awareness around the Greater Toronto Area.
She started her cancer research journey after her bachelor’s degree from Queens University when her mother died from ovarian cancer three days before she convocated.
“However, my awareness and passion to address the cancer disparities in breast cancer specifically started in 2008 when for the first time after going to cancer conferences for over 15 years, I learned that there was a breast cancer subtype disproportionately affecting Black women.”
She says up until that point none of the leaders in breast cancer research globally had ever mentioned triple-negative breast cancer and its disproportionate impact on Black women.
When she discovered that, she immediately started some research on her own and initiated her project in 2011 in Barbados, Jamaica and Nigeria.
“This is a testament to the resilience, determination, the faith and hope of Black people,” says Dr. Daniel noting that ten years ago when she submitted her first application to study triple-negative breast cancer in Black women in Canada it was rejected.
The reviewer #1of the application told her that the study was not relevant to the Canadian context. As a Black female cancer biologist and cancer survivor she was surprised by that answer.
Dr. Daniel is urging Black Canadians to share the information about the study with their families and to participate, financially as well as by giving samples of blood, so the researchers can sequence their genomes.
Speaking at the official launch of the genCARE Project on January 27 at the SickKids Peter Gilgan Centre for Research and Learning in Toronto, Dr. Allen said at its core, “genCARE was born out of a simple but real reality—a powerful one—that Black people have been historically underrepresented in genomic research across Canada, in fact, internationally. As a result, when advances in medical care driven by precision medicine occur then these populations are often left behind.”
He says when these data are incomplete it means care might be less precise, less effective and inequitable.
“In this context, precision medicine then is an approach to healthcare that utilizes one’s genes, the environment, and personal characteristics to come up with a more tailor-made package of understanding the onset, the genesis of disease, improved diagnosis, prevention and treatment. So, it becomes more targeted to the individual or the population.”
Dr. Allen says it helps to move away from a one-size-fits-all approach to a more focused best strategy.
The researchers will focus on chronic conditions that are prevalent disproportionately within the Black community such as hypertension, adult-onset diabetes, and triple-negative breast cancer. Also included will be individuals who have other medical conditions as well as individuals who are completely well.
Dr. Allen, who is the administrative lead of the genCARE project, says they need the full spectrum of entities including so-called normality.
“We want genCARE to be grounded in community engagement and transparency. We want to ensure that the work is not done on the community but with the community.”
He underscored the importance for them to follow best practices relating to research ethics, informed consent, transparency, privacy, confidentiality and data governance.
The genCARE project was developed in close collaboration with The Centre for Applied Genomics at SickKids and the McGill Genome Centre in Montreal, part of the CGEn network, Canada’s national platform for genome sequencing and analysis, which will do the bulk of the sequencing.
He says the hope is that genCARE will help to lay the foundation for a future in which precision medicine in Canada truly reflects the diversity of its people.
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| Photo contributed. Left to right: Dr. Juliet Daniel, Wesley Oakes, Britt Fiander, Dr. Loydie Jerome-Majewska, Dr. Upton Allen, Jean Augustine, Craig Wellington, Dr. OmiSoore Dryden and Dr. Carl James |
Dr. Jerome-Majewska says it was important to include pregnancy-related disorders in the study because they impact the health of the mother and the child she is carrying, and they last long after the pregnancy.
“In our project, one of our goals is to focus on preeclampsia – that is associated with diabetes and hypertension.” Preeclampsia is a serious pregnancy complication that causes persistent high blood pressure.
She says 7 per cent of births by Black women are complicated due to preeclampsia compared to 4.3 per cent for non-Black women. The maternal mortality rates for Black women with hypertension complications are 2.5 to 3 times higher than for white women.
“With the genCARE Project, one of our objectives is to collect DNA and genetic material from pregnant women and non-pregnant women because this is a scientific project-- you must always have controls-- and to collect information about systemic barriers that may also impact these pregnancy outcomes and to study and uncover what these causes are.”
They are looking for volunteers that identify as Black. At the first visit, they will explain the project to participants, ask for volunteers to consent to participate in the study, complete a questionnaire that will provide information on their socio-economic status and barriers, their blood pressure and glucose level will be measured and they will be asked for consent to look at their clinical data to look at anything found at the first and only visit. They will collect two teaspoons of blood which will be taken back to the laboratory where they will isolate the nucleic acids DNA and RNA.
The researchers will anonymize the DNA sent to the two genome centres so that no one can be identified. The sequencing of the DNA and RNA made from the sent DNA will take place there.
“This anonymized DNA that we collect from this project will also contribute to the larger sequencing projects that are taking place here in Canada and indeed the world because we are setting an example.”
Dr. Jerome-Majewska says the sequences will be shared on secured databases without the participant’s identity adding the genetic information of each person’s individual sequences can be compared against.
“In order for precision medicine to really truly deliver, we must have DNA from all humans. If we only have part of the information, precision medicine will not work, not for us and not for those people who think that we don’t matter. So, this is truly a project that will move the world.”
She says to reduce risks to participants they are working with community partners in the form of an advisory group to place safeguards on who has access to the genetic sequences from the genCARE Project and to reduce the risk that bad actors will use this information to the detriment of the community.
In Quebec, the community advisory group consists of a diverse cross section of the Black community, including community advocates and investigators of the project, for example Dr. Anita Brown-Johnson, former chief of family medicine at the McGill University Health Centre, who attended the launch in Toronto.
Dr. Jerome-Majewska says members of the Black community should have a role in the governance of data from Black people in Canada.
“We are working with genome centres, members of advisory groups and the funding agencies to have a framework that will facilitate our participation in this exciting genomic project but also, importantly, protect our community from potential harm as much as possible.”
Dr. OmiSoore Dryden says this work is taking place on lands shaped by long and ongoing Indigenous presence, resilience and stewardship.
She also noted that Black communities in Canada, particularly African Nova Scotian communities who have been here for over 400 years, also have deep, long and ongoing multigenerational, including African Indigenous histories in Canada.
“We are not newcomers to Canada’s health system, nor to their consequences. These histories matter as we think about what ethical future-oriented genomic research should look like.”
Dr. Dryden says genCARE emerges from a simple but meaningful question – What would genomics look like if Black communities were centred not only as participants but as partners and decisionmakers?
She says for far too long Black people have been overrepresented in health statistics that describe risks and underrepresented in the benefits that research promise to deliver.
“Too often data has been collected about us without being accountable to us. genCARE is an effort to do things differently,” says Dr. Dryden noting that her work brings together genomics community-engaged research and Black feminist and Black queer approaches to health and care.
She says over many years she has worked alongside African Nova Scotian communities and Black communities across Canada, including Black queer and trans communities who are frequently positioned as hard to reach when in reality they are too often asked to engaged with systems that have not earned their trust.
“At the centre of this work is data governance and data sovereignty. In practical terms, this means asking not just what data we collect but who decides, who governs access, who interprets results, who benefits from downstream use. Data sovereignty reminds us that data is never neutral, it carries history, power, and consequences.”
Dr. Dryden says this is an important moment and opportunity for national partners and infrastructures, including Genome Canada and the Pan-Canadian Genome Library, to demonstrate leadership.
“Respecting Black and African Nova Scotian communities’ participation in genomics means recognizing that trust must be built through transparency, shared governance and long-term accountability.”
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| Jean Augustine and Adaoma Patterson at the official launch of The genCARE Project at SickKids on January 27, 2026. |
Dr. Larry Goodridge, President of the Canadian Black Scientists Network, says this initiative represents more than just groundbreaking science.
“It represents hope, equity and the power of research that truly reflects who we are as Canadians. For far too long, Black communities in Canada and around the world have been underrepresented in genomic research.”
He noted that underrepresentation has real consequences--diagnostic tools, treatment plans and even public health policies are often built on data that does not reflect the diversity of Canada’s population.
This has contributed to chronic health disparities, from hypertension and Type 2 diabetes, to aggressive forms of breast cancer—conditions that disproportionately affect many Black Canadians.
“The genCARE Project will decisively change these unequitable healthcare practices and research. By sequencing 10,000 genomes from Black peoples across the country, including African Nova Scotian communities and by integrating both genetic data and the social determinants of heath, these researchers are creating data research that will finally allow a data resource that will finally allow precision medicine to live up to its name for Black Canadians.”
Wesley Oakes of Genome Canada says from the start, the Canadian Precision Health Initiative was a massive undertaking--$200M investment brought together by partners across industry, academia, and the public sector to build resource that actually reflects the diversity of Canada.
He says it was ambitious in its scale and timeline but its real heart lies in its vision—a belief that by building a resource of ancestrally diverse genomes “we could create a powerful tool to finally tackle deep health inequities across Canada.”
“genCARE is the ultimate expression of this vision. It may very well represent the largest single research investment in Black health in Canadian history,” says Oakes, noting that it matters because Black people in Canada continue to face significantly worse outcomes than the general population.
He says the data suggest that these disparities are not just persisting they are actually getting worse.
Meanwhile, Britta Fiander from Genome Atlantic is confident that genCARE will serve as an exemplary project paving the way for equitable precision medicine for all communities across Canada.
Providing a scope of the project, the Director of Innovation Programs, says there are 17 distinct co-funding organisations, 28 letters of collaboration and support from organisations, and over 1000 emails exchanged between project leads and partners, resulting in more than $18M in project funding spanning four sites across Canada.
While acknowledging the funding from Genome Canada, Genome Atlantic, Ontario Genome, Genome Quebec, and others, Dr. Allen thanked the Black Opportunity Fund for its commitment to funding.
Craig Wellington, CEO of the Black Opportunity Fund, says the project is the largest health research initiative ever specifically for Black communities in Canada.
“That is extremely powerful. We are happy to be a part of this, we are happy to be a national community partner, we work from across the country. We’re about collaboration, bringing people together and that is what I think is critical about this, that we have representation here from across the country and we made sure to bring the representatives here in person, not just on screen.”
The Black Opportunity Fund will be helping to organize similar events in Quebec and Nova Scotia.
Describing the project as a gamechanger, Wellington says it is addressing an example of a long-term systemic issue which will have longstanding impact.
Patricia Russell, an ambassador of The Olive Branch of Hope says cancer showed up in her life twice.
“It was an uninvited guest that changed everything. The name tag that it handed me was triple-negative breast cancer. It’s a diagnosis that carries fear, urgency and far too many unanswered questions, especially for Black women. But I’m a believer that your diagnosis does not determine your prognosis.”
She says representation in research matters, equity in healthcare matters and described the genCARE Project as truly transformative.
“Together, we’re working towards sequencing the genes of 3,000 Black women in Canada living with triple-negative breast cancer. This is a powerful step toward better understanding, better treatment and better outcomes for generations to come.”
In a video, Sharon Davis-Murdoch and Rev. Debbie Simmonds, co-presidents of the Health Association of African Canadians (HAAC) in Halifax, said historically African Canadians have been subjected to anti-Black racism and the combined impact of the social and structural determinants of health.
“These experiences have deeply impacted our interactions with the health system. Being subjected to everyday systemic barriers along with the combined impact of the factors that harm our health leads to more chronic disease.”
They said HAAC identified almost 26 years ago that Noa Scotia did not have and has never had information about how many people of African ancestry in Nova Scotia live with chronic disease, including mental illness, high blood pressure, diabetes, sickle cell anemia, cancers, particularly breast, prostate, colorectal and lung, heart disease and others.
The organization has fought for a comprehensive system-wide heath data collection that allowed people to self-identify by ethnicity, race and language in Nova Scotia and across Canada. They said after 23 years of advocacy, the Nova Scotian government finally agreed to move forward on it.
“HAAC maintains that data that is collected by race, ethnicity and language will help government identify and address systemic racism and inequities in healthcare. We need to ensure that policies and programs are made to better serve our people and communities,” they said, underscoring the importance of joining decision making of Black health data governance.
Dr. Carl James, the Jean Augustine Chair in Education, Community and Diaspora in the Faculty of Education at York University, says one of his roles will be to work on the community end of the project.
“There will be others who will be doing the research in the science and so forth but I would want to be able to help us reach the community.”
Jean Augustine, 88, the first Black woman elected to Canada’s Parliament, serving from 1993 to 2006, and a former Minister for Multiculturalism and the Status of Women, has volunteered to be the project’s first participant.
She says she has spent her whole life in advocacy and activism and in ensuring that “we do the very best for our community and trying to hold bodies, organizations, parliamentary processes, etc. to a level that would respond to us, with us, and by us.”
She advised the researchers to use simple language to engage and enlist the community’s participation.
Augustine says representation matters but there was a time when Black community members fought against gathering data because they thought it would be used against the community, especially in the education system, policing, and other areas of life.
Paul Bailey, Executive Director at the Black Health Alliance, thinks the genCARE Project has the opportunity to “transform the ways that we look at improving outcomes for Black people at scale.”
“They’re going after 10-11,000 people to try and get that representative sample of Black people across our diversity. So, I think the opportunity there is transformative. We don’t often have that opportunity to look at the Black population at that level and then think about the opportunities for intervention.”
The project is open to members of Canadian Black communities with citizenship or permanent resident status, persons aged 18 years and older, and who self-identify as Black.
For more information, email gencareproject@sickkids.ca or call 416-813-5443.
