Private-pay genetic testing refers to genetic tests that are not covered by the Alberta Health Care Insurance Plan (AHCIP). Some people choose to pay for genetic testing if they are not eligible for publicly funded genetic testing.
Some private-pay genetic testing is similar to the genetic tests that are covered by the Alberta Health Care Insurance Plan and may be done after speaking with your healthcare provider. For example,
cell-free DNA screening (cfDNA, also called non-invasive prenatal screening or NIPS) is a common prenatal screening test that is not currently covered by AHCIP under most circumstances. Many primary care providers and obstetricians in Alberta order this private-pay test for couples who choose this type of test.
Carrier testing is another example of a test that is only covered by ACHIP in high-risk situations. If you do not have a family history of a genetic condition, you may choose to pay privately for carrier testing for conditions like
spinal muscular atrophy and
cystic fibrosis.
Other types of private-pay genetic tests do not need to be ordered by a primary care provider or specialist. Examples include:
- ancestry testing (like for ethnicity and lineage)
- trait testing (like hair loss or eye colour)
- wellness testing (like testing for nutrition and diet or fitness and exercise)
- genome sequencing that can be purchased directly from a company without involving your primary care provider
- paternity testing to identify a child’s biological father
There are many things to consider when thinking about private-pay genetic testing:
Privacy
When you pay a commercial company for a genetic test, that company has access to your DNA and some personal data, which can introduce different privacy issues compared to a lab operating within the Alberta healthcare system. Find out how your data is protected and how it can be used by the company.
Legitimacy
Check if the lab is certified and by whom. Look for labs that have certification from the College of Physicians and Surgeons of Alberta (CPSA), Canadian College of Medical Genetics (CCMG), Clinical Laboratory Improvement Amendments (CLIA), or College of American Pathologists (CAP).
Have the company’s staff members received extensive education in clinical genetics? Does their staff include certified genetic counsellors (look for CCGC or CGC listed after names), medical geneticists, PhD geneticists, or molecular pathologists?
What testing platform is being used? Not all testing platforms offer the same quality of data.
Understanding the results
No matter the results of your private-pay genetic test, you likely will have questions. Before doing a test, find out how the company plans to answer your questions.
Is a certified genetic counsellor or other trained genetic professional available before or after testing to provide guidance and help? If so, is the service included in the cost of testing or is there an extra charge?
Referrals to the Clinical and Metabolic Genetics program to review private-pay genetic test results
may not be accepted depending on the lab used, the type of testing, and the results. Not all DNA
variants reported on private-pay genetic testing will change your medical care. Referrals may be accepted to review the results of variants found in important genes. 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.
Understanding the test
It’s important to fully understand the test results. Find out exactly what is being tested (genetic conditions, ancestry, traits, or carrier status) and how you will get the results.
Your test results may not include all the information you were hoping to find. You may be surprised by unexpected information or disappointed.
Who is recommending the test
Is anyone recommending the private-pay genetic test for you? Can they explain in detail why the test might be useful for you? Can they explain the limitations of the testing? Do they understand the differences between the types of genetic testing platforms?
Is the person recommending the test a healthcare provider with education and expertise in genetic health concerns and genetic testing?
National Society of Genetic Counselors position statement
The National Society of Genetic Counselors writes that you need to “carefully consider the benefits, risks, limitations, and privacy implications of genetic testing” for yourself and your family before buying a genetic test that you request or order yourself, called consumer-initiated genetic testing, which includes many of the private-pay genetic tests above.
See the full
statement.
