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What is genetic counselling?
Genetic counselling is a healthcare service that provides information to individuals and their families about how genetics can impact health. It also involves supporting families as they adapt to new genetic information.
Genetic counselling may help individuals:
- Understand their chances of having a genetic condition
- Understand the chance of having a biological child with a genetic condition
- Understand the features of a genetic condition and how it is passed down (or inherited) in a family
- Make informed decisions regarding family planning, genetic testing, and future health care, based on genetic test results
Usually, genetic counselling is provided by a Genetic Counsellor. Sometimes doctors, nurses, or other health care providers also provide genetic counselling.
Genetic counsellors often work in a hospital-based genetics clinic. They also work in laboratories, industry, education, and public health settings.
A formal definition of genetic counselling can be found in this peer reviewed journal article.
What kind of information can genetic testing give me?
Genetic testing is a powerful tool used to look for genetic changes (alterations in our DNA) that may impact health. These genetic changes are called DNA variants. DNA variants may provide useful information about an individual’s health, or the health of their relatives.
Genetic testing might find a genetic cause for a previously diagnosed condition, or it might uncover the chance of developing a health concern in the future. Sometimes genetic test results can help guide future health screening, suggest preventative options, or guide best treatments.
When genetic testing is done, it might report a change in a gene that makes that gene work incorrectly. This type of alteration is called a “pathogenic variant”. Genetic testing might also reveal that no gene variants were found in a gene, or genes, of question. Sometimes genetic testing reports a variant that is uncertain, and the genetics team can’t confirm whether that variant causes a health condition, or whether it may be a harmless and insignificant genetic change.
As we learn more, the information available about genetic testing and genetic test results may change. It may be important to keep in touch with your genetics health care providers.
What kind of training do genetic counsellors have?
Genetic counsellors obtain a Master’s degree in Genetic Counselling, after having completed a Bachelor degree. Genetic counsellors working in Canada are certified by either the Canadian Board of Genetic Counselling (designated CCGC) and/or by the American Board of Genetic Counseling (designated CGC).
Do I have to pay to meet with a genetic counsellor?
In Canada, an appointment with a genetic counsellor is often covered by provincial health systems for individuals who meet eligibility criteria. Eligibility can vary from centre to centre.
Genetic counselling appointments through a private clinic are typically not covered by provincial health insurance plans. Some extended health insurance plans may cover a portion of a fee for genetic counselling and/or genetic testing. Some genetic testing companies offer accompanying genetic counselling services.
What sorts of topics might come up in my meeting with a genetic counsellor?
There are many topics that will be discussed when meeting with a genetic counsellor. A genetics appointment might also include a physical exam, performed by a Medical Geneticist (doctor). If genetic testing is offered, it will most often be done using a blood or saliva sample.
Part of a genetics appointment includes gathering accurate personal health information and family history. Common questions asked by a genetic counsellor might include:
- Current and past medical history.
- Family health history information. Usually, a genetic counsellor will ask questions about at least three generations of your family. It is useful to know the name of any conditions diagnosed in relatives, as well as their age at the time of diagnosis.
- Your partner’s medical and family history, if relevant.
During an appointment, a genetic counsellor may discuss:
- The features, signs, and symptoms of a genetic condition.
- How a genetic condition is passed down (inherited) in a family.
- The likelihood of having a genetic condition.
- The chance of having a biological child with a genetic condition.
- Genetic testing options.
- The benefits and limitations of genetic testing.
- The possible results from a genetic test.
- Available screening, surveillance, and/or treatment options.
- Available resources related to a genetic condition.
I am adopted. Can I still benefit from meeting with a genetic counsellor?
Yes, some genetic testing is offered regardless of known family history information. Also, if you have features of a genetic condition, there may be options for genetic testing to clarify a diagnosis.
For those who do not know about the health of their biological relatives, the results of genetic testing can sometimes be used to provide information about future health care options.
DISCLAIMER
The materials and information presented by the Canadian Association of Genetic Counsellors (“CAGC”) on this platform is for general informational purposes only. It is not advice and is not intended to create a client relationship. It is not a substitute for advice from a medical practitioner and any party with personal medical questions or in need of medical assistance should seek advice from a qualified professional. The field of genetics continues to evolve, which means, despite reasonable efforts to maintain the information provided on this platform, CAGC cannot guarantee the same is current or correct. CAGC expressly disclaims all liability with respect to actions taken or not taken based on information which it provides or omits on this platform.