Eligibility
Albertans are eligible for publicly funded genetic testing when their personal medical history or family history meets specific criteria, which are set out by the Alberta Lab Formulary Committee, established by Alberta Health Services and Alberta Precision Laboratories.
If you or your child are eligible for genetic testing, it is up to you to decide if you want the genetic test or not. Some people choose
private-pay genetic testing when they are not eligible for publicly funded testing.
How the results may affect you
Before deciding about genetic testing, you should understand how the results may affect you or your child. Genetic testing can lead to more or fewer medical appointments, tests, and procedures. What will you need to do if the test is positive? What if it is negative or uncertain? Will the test results change any decisions you might make about your health, your child’s health, your family, or your lifestyle? If testing will not change any of your decisions, you may decide not to do genetic testing.
Prenatal genetic testing
Prenatal genetic testing may find a genetic condition, such as
Down syndrome, that may greatly impact your child’s life and your own life as their caregiver. If you are pregnant and thinking about genetic testing, consider how your ethical, social, and religious beliefs would guide your decisions based on the results.
Sharing with relatives
A genetic test result is private and protected medical information. The result belongs to you. However, your result could also have health implications for your relatives. Think about whether and how you might share this information with them. How might your relatives react? Genetic counsellors can provide support for sharing genetic information with relatives.
Sensitive information
Genetic testing can sometimes reveal
unexpected information. This may include:
- a chance for another genetic condition
- information about how people in your family are related (for example, if a child is not biologically related to a parent, or if the parents are biologically related to each other)
This is not the purpose of most genetic tests but can be revealed by the results. If you have concerns, talk to your genetic counsellor or medical geneticist
before testing so you can make a plan together about what information will be shared.
Insurance
Because genetic testing can tell you information about your health, you may have questions about how it could affect your insurance. There is currently a law in Canada that provides some protection. For example, an application for life insurance should not ask about genetic results. However, the application may ask about medical conditions, such as cancer, for you and for your close biological relatives.
For more information, you may wish to speak to an insurance broker or learn more about
genetic discrimination.
Choosing to get a genetic test
You might decide to do a genetic test because
- You already have symptoms and want to find out if a genetic condition explains them.
- You are healthy but want to know if you will develop a condition that runs in your family so that you can prepare yourself and your family. You might choose, for example, to set up financial arrangements in a certain way or change certain life plans.
- You want information to help with reproductive planning and decisions about having children.
- Living with the uncertainty of having a genetic condition feels harder than knowing for sure, even if the result shows you will get the condition.
- A positive result could open the door to new treatment or medical care options, such as screening for signs of that health concern.
Choosing not to get a genetic test
You might decide not to get a genetic test because:
- You’re healthy and would rather not know if you may develop the genetic condition in your family.
- You’re worried that knowing the results could affect your relationships.
- You may worry that you will feel guilty if you test negative but a relative tests positive, or that you will be upset if you test positive and they do not.
- You feel there is no benefit to knowing now because lifestyle changes or treatments might not prevent the genetic condition.
Genetic counselling before and after genetic testing provides you with the information you need to make informed medical decisions. It can support you through the decision-making process and help you talk through the thoughts and emotions that can come with genetic testing.
Many Albertans receive genetic testing through their specialist (like their cardiologist or neurologist), without a referral to specialized genetics teams. If you have lots of questions or want to discuss your choices further, talk to your primary care provider about whether you are eligible for a referral to the
Clinical and Metabolic Genetics program. Not everyone meets the criteria for a referral to genetics. If you want to know if you meet the criteria, talk to your primary care provider.
