Many aspects of healthcare access in Canada are based on where you live. Access to genetic testing for hereditary cancer is no exception. To assess and illustrate this, we reached out to our community and spoke to five women to map where they would and would not be eligible to access genetic testing in Canada in the present day.
We asked these women about their personal and family health history based on the genetic testing eligibility criteria of provinces and territories (PTs) that had this information online and publicly available. In focusing on just public information that is online, we recognize that our findings are based only on this information. In other words, a PT might have eligibility criteria that can be gotten from a genetic counsellor but not posted online. We choose to focus on just online information because many people get their health information online and we wanted to reflect what individuals can find out about their own access.
Specifically, Manitoba, Newfoundland and Labrador, Northwest Territories, Nunavut, and Saskatchewan do not have publicly available information online on how a person may be eligible to access hereditary cancer genetic testing. Therefore, this series comments only on eligibility access in Alberta, British Columbia, New Brunswick, Nova Scotia, Ontario, Prince Edward Island, Quebec and Yukon.
It is also important to note that Yukon Territories uses the same eligibility criteria as British Columbia, while New Brunswick, Nova Scotia, and Prince Edward Island share the same eligibility criteria.
Let’s meet Jaclyn Carter and explore where she may or may not be eligible to access genetic testing for hereditary cancer in Canada.
About Jaclyn Carter
Jaclyn found a lump in her breast on a whim, during her first ever self-breast exam. She was diagnosed with ER/PR+ invasive ductal carcinoma (IDC) at the age of 33. After her diagnosis, Jaclyn was eligible to be tested for the BRCA1 and 2 mutations in Alberta, where she lived and still lives, through Alberta Health Care. Jaclyn’s surgical oncologist referred her to a geneticist for consultation and the geneticist suggested that she pay out-of-pocket to test for all known genetic cancer markers, beyond the BRCA1 and 2 gene mutations, using the Color test.
While Jaclyn did not have any known genetic risk factors, and had no family history of breast cancer, other types of cancer do run in her family. Because of this, Jaclyn decided to proceed with additional testing. The Color test, along with the genetic testing done through Alberta, confirmed that she did not carry any genetic cancer mutations.
In Jaclyn’s Own Words
“I postponed surgery to await genetic testing results, and ultimately altered the course of my surgical plan, based on the assumption that I carried a genetic mutation and that a double mastectomy was the safest way forward. […] I would later learn that I carried zero genetic markers for cancer. Not a single one, BRCA-related or otherwise.”
Where Is Jaclyn Eligible to Access Hereditary Cancer Genetic Testing in Canada?
Based on publicly available information on the eligibility criteria to access genetic testing for hereditary breast cancer, Jaclyn is eligible to access testing in Alberta, British Columbia, New Brunswick, Nova Scotia, Prince Edward Island, Ontario, Quebec, and Yukon.
Alberta
Since Jaclyn was diagnosed with breast cancer under the age of 35, her personal health history makes her eligible to access testing in Alberta.
British Columbia and Yukon
Jaclyn is also eligible to access genetic testing in British Columbia and Yukon based on her personal health history because she meets the criteria of being diagnosed under 35 years old.
Even if Jaclyn did not meet any of the personal health history criteria, she would still be eligible to access genetic testing in British Columbia and Yukon as she meets three of their family health history criteria. In order to be eligible to access genetic testing in British Columbia and Yukon, a person needs to have a close relative on the same side of the family that meets one of the personal health history factors or they would need to meet at least two of the family health history criteria. Jaclyn is eligible to access testing in British Columbia and Yukon because she meets the following criteria:
- Cancer in over more than one generation, in close relatives on the same side of the family
- Close relatives on the same side of the family with more than one cancer diagnosis
- A close relative on the same side of the family with a less common cancer
New Brunswick, Nova Scotia, and Prince Edward Island
In New Brunswick, Nova Scotia, and Prince Edward Island Jaclyn meets one of the personal health history criteria required, which is:
- Diagnosed with breast cancer younger than 40
Because of this, she is eligible to access hereditary cancer genetic testing.
Ontario
Jaclyn is eligible to access genetic testing in Ontario because she was diagnosed with breast cancer at under the age of 45, meaning that she meets one of the personal history criteria.
Quebec
Jaclyn meets the personal health history criteria for testing in Quebec because she was diagnosed younger than age 35.
Where Is Jaclyn Not Eligible to Access Hereditary Cancer Genetic Testing in Canada?
Based on the provinces and territories that share publicly available information on the eligibility criteria to access genetic testing for hereditary breast cancer, there isn’t a province or territory that Jaclyn would not be currently eligible to access genetic testing in.
In this blog series, we see just how much access to healthcare in Canada can be determined simply because of where a person lives. Canada needs eligibility criteria that are the same across the country. Individuals concerned about hereditary cancer and people diagnosed with breast cancer cannot be at the mercy of their postal code determining their health and access to adequate healthcare.
Not only should access to genetic testing be the same across Canada, but it should also be updated to ensure it reflects our latest knowledge of hereditary breast cancer and gene mutations. Sources like the Canadian Recommendations for Germline Genetic Testing of Patients with Breast Cancer: A Call to Action should be consulted to develop standardized, inclusive, guidelines that don't let people fall through the cracks. Tied in with this is the importance of testing a large number of gene mutations that have been associated with breast cancer, not just the BRCA1 and BRCA2 gene mutations. Tests that analyze beyond BRCA1 and 2 mutations should also be standard, so that individuals have a wider picture of their health. Since results can have such a huge impact on a treatment plan, nobody should be forced to pay out-of-pocket to see if they do or do not have hereditary breast cancer. Once more comprehensive guidelines for genetic testing have been developed, the eligibility to access genetic testing should be posted online and made publicly available by all provinces and territories.
In Jaclyn’s case, we see that for most of the provinces where she is eligible to access genetic testing for hereditary breast cancer, her eligibility is based solely on her age at diagnosis. British Columbia and Yukon are the only two places that her family health history of cancer makes her eligible for testing. In all other instances, the requirement is that she have a family history of breast (or ovarian) cancer specifically. While she was able to get tested for a large panel of genes, by paying out-of-pocket, and it was found that she has no inherited genetic mutations, it would have been very easy to her to fall through the cracks.
Additionally, where the five women we spoke to may or may not be able to actually access genetic testing is just for illustrative purposes. We only show where they meet the eligibility criteria that has been set and made publicly available by each PT. It does not reflect their actual access to genetic testing for hereditary cancer as there may be further access criteria. For example, in some places a person can get genetic testing automatically if they meet the criteria, while in others, a referral from a doctor might be needed. This was shown in Mykah’s case where she does not meet the eligibility criteria in Alberta, where she lives, but was still able to get tested, although with a lot of bumps along the way.
Genetic testing is an important part of both prevention and treatment, and it is critical that access to genetic testing in Canada should reflect this.
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