Understanding the unmet need for genetic counselling in Canada

Our genes are made up of DNA, and they are like instructions or building blocks that help our bodies develop, function, and grow as they should, but how often do we think about our genes? For some people, they may think about them in passing, like when they talk about a quirky trait or notice a strong family resemblance. 
 
But other people think about their genes a lot, because there is a health condition that runs in their family, and they may wonder about what this condition means for their own health and the health of their family members. These people may need genetic counselling or genetic testing to help them understand and adapt to the medical, psychological, and emotional aspects of having a genetic condition in their family. 

Genetic testing involves looking at someone’s DNA to see if there are any changes that might explain why someone has developed a specific condition or trait. The goals of genetic testing are to help with diagnosis, understand prognosis, and can be used to assess if someone has a chance to develop a condition in the future. 

Genetic counselling involves education and counselling to help people understand genetic information and adapt to it. Genetic counselling can help with empowerment, health promotion, and informed decision making. 

There are many benefits from receiving genetic counselling and testing, like increased knowledge, reduced anxiety, and positive health behavior changes. Despite these benefits, not everyone who needs genetic counselling and testing are able to access it. 

We are a team of researchers at the University of British Columbia who are focused on research to improve equitable access to genetic counselling in Canada. One of the things we are trying to do is understand how many people in Canada need genetic counselling? 

To answer this question, we surveyed over 1,100 people across Canada and we used a tool developed by the National Society of Genetic Counsellors to measure the unmet need for genetic counselling. 

Through our survey, we found that 39% of participants had unmet need for genetic counselling —  this was a much higher number than we were expecting. To put this into perspective — unmet need for genetic counselling is higher than unmet need for dental healthcare in many parts of Canada.

We found that people were more likely to have unmet need for genetic counselling if they were younger, if they had mental health concerns, if they had lower levels of “capability” (which measures the extent to which people feel they can participate in their lives), and lastly, and if they imagine more benefits from genetic counselling. 

The goal of doing this research is to try to improve access to genetics healthcare for everyone who needs it. This involves making sure we have enough genetic counsellors and specialized genetics physicians to provide care and thinking about new ways to provide care so that we can reduce the wait times and make genetic counselling more accessible. 

After hearing about our research, you may be wondering if YOU might need genetic counselling or, wondering if it could be helpful for you or your family. 

Someone may benefit from seeing a genetic counsellor if they:

  • have a diagnosis of a condition that may be genetic 
  • have had genetic testing and have questions about the results 
  • are trying to decide if they want to have genetic testing 
  • are worried or have questions about what a condition they have means for other family members 
  • have concerns about a condition thar runs in their families and want support from an expert 
  • struggle with feelings of guilt, blame, shame, or confusion about a health condition that they have or that runs in their family. 

If you think you may need genetic counselling, you can speak with your family doctor or use the resources below to find out more information about finding a genetics clinic near you. 

Resources

Find a genetics clinic in Canada.
Find a genetic counsellor in the USA.
Self-assess to find out if meeting with a genetic counsellor could help you.  

About the researchers

Kennedy Borle is a board-certified genetic counsellor and PhD Candidate at the University of British Columbia. This research is being done as part of her doctoral research. Her supervisors are Dr. Jehannine (J9) Austin and Dr. Larry Lynd. Learn more about Kennedy here.