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.
In the first articles of this series, we spoke to Mykah Obrigewitch and Rebecca Dahle. Today, let’s meet Khalilah Elliott and explore where she may or may not be eligible to access genetic testing for hereditary cancer in Canada.
About Khalilah Elliott
Khalilah currently resides in West Kelowna, BC. At the time of her diagnosis, she lived in Binbrook, ON. She was diagnosed with stage III invasive ductal carcinoma in 2016, a month after her 39th birthday. At the time, her daughter was 11 and her son was 5. Khalilah’s treatment consisted of 8 rounds of high-dosage chemotherapy, a double mastectomy, 21 rounds of radiation, 18 dosages of Herceptin, and continual Tamoxifen medication for 10 years.
During treatment, she had genetic testing done for 21 different breast cancer markers as part of a study she had signed up to participate in; none showed a genetic link to her breast cancer diagnosis. It was explained to her that different genes are being discovered all the time, but at that moment, they didn't know why she had developed breast cancer, although she had a family history.
Two of Khalilah’s great aunts had had breast cancer; the younger had passed away in her late thirties and her sister had had a mastectomy. About a year after Khalilah’s diagnosis, her aunt on her mother’s side underwent genetic testing and discovered that she had the BRCA 1 gene mutation. Her aunt opted to go the preventative route and had both breasts removed (a prophylactic mastectomy) to reduce the chance of a breast cancer diagnosis later in life.
Khalilah is willing to be tested again in the future, as new genes are uncovered.
Where Is Khalilah 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, Khalilah is eligible to access testing in Alberta, British Columbia, New Brunswick, Nova Scotia, Prince Edward Island, Ontario, Quebec, and Yukon.
Alberta
Two of Khalilah’s great aunts were diagnosed with breast cancer, one who was under 50 years of age at the time. This, along with Khalilah’s own diagnosis under the age of 50, means that she meets the personal and family history eligibility criteria for genetic testing in Alberta.
British Columbia and Yukon
Khalilah 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 50 years old.
Even if Khalilah 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. Khalilah is eligible to access testing in British Columbia and Yukon because she meets the following criteria:
- Cancer at an age earlier than is common for that type of cancer, in close relatives on the same side of the family
- Multiple close relatives on the same side of the family with the same type(s) of cancer
- Confirmed hereditary cancer gene mutation
While Khalilah meets the family history criterion of having a confirmed hereditary cancer gene mutation (through her mother’s aunt) that makes her eligible to access genetic testing, it is important to note that this eligibility would not have been met at the time of her diagnosis, given that her great aunt received her positive diagnosis of a BRCA1 gene mutation a year after Khalilah’s breast cancer diagnosis. Since Khalilah meets two other family history criteria, she would have been eligible for hereditary breast cancer screening in British Columbia and Yukon at the time of her diagnosis.
New Brunswick, Nova Scotia, and Prince Edward Island
In New Brunswick, Nova Scotia, and Prince Edward Island Khalilah meets one of the personal health history criteria required, which is that she was diagnosed with breast cancer younger than 40 years old.
She also meets the family health history criteria of having a confirmed BRCA1 or BRCA2 gene mutation in a blood relative. As with her eligibility to access genetic testing in British Columbia and Yukon, this criterion would not have been met at the time of Khalilah’s diagnosis, given that her great aunt received her positive BRCA1 gene mutation results a year after Khalilah’s breast cancer diagnosis.
Given that Khalilah met a personal health history criterion at the time of her diagnosis, she would have been eligible to access testing. If she did not meet any of the personal health history criteria, her eligibility based on her family health history would not have been met until after her aunt’s positive BRCA1 gene mutation.
Ontario
Khalilah is eligible to access genetic testing in Ontario because she meets the following personal health history criterion:
- Diagnosed with breast cancer at 45 or younger
And the following family health history criteria:
- Personal diagnosis of breast or ovarian cancer and 1 or more close relative diagnosed with breast or ovarian cancer. In family with 2 breast cancer diagnoses, one must be diagnosed at 50 or younger
- Personal diagnosis of breast or ovarian cancer and 2 or more close relative diagnosed with breast cancer
Quebec
Although Khalilah does not meet any of the personal health history criteria for testing in Quebec, she does meet the family history criterion of a confirmed BRCA1 or BRCA2 gene mutation. As was the case in British Columbia, Yukon, New Brunswick, Nova Scotia, and PEI, this eligibility would not have been met at the time of her breast cancer diagnosis. Khalilah would only have met this eligibility criterion a year after her breast cancer diagnosis, following her aunt’s positive BRCA1 gene mutation.
Where Is Khalilah 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 Khalilah 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. Of the three women we have spoken to so far, only Khalilah received gene testing beyond the BRCA1 and BRCA2 genes. However, she was tested through a study, not her province. 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.
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. It is important that access to genetic testing in Canada reflects this.
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