Who should be having BRCA testing?

Angelina Jolie had a double mastectomy as a result of finding out that she had a mutation in her BRCA1 gene

Veritas Genetics have announced that they’re collaborating with Dr. Steven Narod, co-discoverer of the BRCA1 and BRCA2 genes, from Women’s College Hospital (WCH) in Toronto to provide adult Canadians unprecedented access to BRCA testing. Dr. Narod will be working alongside the Director of the Research Molecular Genetics Laboratory at WCH, Dr. Mohammad Akbari, as co-principal investigator. Veritas will be supporting the project by performing the genetic tests involved.

“We were introduced to Dr. Steven Narod and Dr. Mohammad Akbari at Women’s College Hospital through a mutual colleague at a time when they were in the early stages of developing The Screen Project,” Mirza Cifric, CEO and Co-Founder of Veritas Genetics, said when speaking to FLG. “We came highly recommended by key opinion leaders in the space and were able to deliver a quality BRCA product at a price they deemed affordable. From our perspective, the opportunity to work with two globally respected leaders was something we could never walk away from. This is going to be a true game-changer.”

BRCA1 and BRCA2 mutations have been linked to higher risks of breast and ovarian cancers (increases of around 68% and 38% respectively), and an estimated 1 in every 200 Canadians will carry a mutation in at least one of the two genes. The genes have also been linked to increased risk of prostate cancer in men, which affects roughly 1 in 8 Canadian men. By detecting these mutations earlier, carriers can take preventative measures to reduce their cancer risk but accessing these tests has been difficult in the past, largely due to the costs involved. Generally, only patients who meet very strict risk criteria are eligible for the tests in Canada.

This initiative, called The Screen Project, is aimed at providing affordable, accessible BRCA testing to both men and women across the entirety of Canada.

 “In terms of The Screen Project, we are aiming to drive 10,000 participants across Canada and support Dr. Narod and Dr. Akbari as the effort evolves. We believe this is the model for the future – access to screening plus appropriate clinical care – and are currently in discussions with five other countries to roll out similar initiatives, based on their respective priorities,” Cifric said.

The project hopes to engage both consumers and physicians directly in preventative care at a lower cost of $165 USD ($220 CAD, £130 GBP). The organisers of the programme have also implemented a system to provide financial assistance to eligible people to ensure that The Screen Project is accessible as possible.

“The whole idea of population-based genetic testing is it is successful when the majority of the population has access to the screening, and we hope that eventually, this will be incorporated into our health system,” Dr. Akbari told FLG. “We don’t want to leave anyone out from this screening program because of their financial situation and are working with the hospital foundation to raise funds that will assist those who cannot afford the cost of the test. That said, we believe the price of $165 USD will be accessible for the majority of the population. We are not asking for any information to evaluate someone’s eligibility for financial assistance. We only rely on an individual’s judgment as to whether the test is affordable for them.”

One of the most important parts of the project is helping participants who test positive for the mutations in contact with medical professionals who can guide them through the next steps. To that end, Dr. Narod and his team will work with BRCA-positive participants as part of the project.

The structure of the programme, using physician-guided population screening with follow up medical care, could be a significant step towards a more generalised system of genetic testing. The Screen Project is in discussion with several other countries who could apply the same framework within their own populations. Importantly, while this project is solely aimed at BRCA testing, the model being used could be applicable to a range of different conditions without the need for complicated restructures.

“The model for The Screen Project could be adapted and applied to any of the 59 genes associated with medically actionable diseases recommended by the American College of Medical Genetics and Genomics (ACMG),” Cifric told us. “Plus, with the critical mass of data collected through whole genome sequencing, we’ll be able to unearth learnings that could lead to prevention methods far beyond new screening panels.”

The tests themselves involve providing a saliva sample, which can be done in a participants own home with the kit provided and then mailed to Veritas, who will perform the genetic tests. Results are expected to be provided in 2-4 weeks.

If you’re interested in taking part in the study and are a Canadian who is 18 years old or older, you can visit their website here.