Genetic risk assessment

Genetic risk assessment is the evaluation of your personal risk for cancer, based on your family medical history. It’s completed by a genetic counsellor and includes discussions about your family history of cancer and recommendations for future action. The assessment may include genetic testing that can identify if there is a gene mutation. If you are thinking about getting a genetic risk assessment, consider the following issues.

Your personal preference

Research has shown that people have strong and differing opinions about genetic risk assessment. Some people want to know about their risk while others prefer not to know. It is important to respect individual wishes. For people who want to know details about their risk, it can be upsetting if they are not provided with all the facts. Others who do not want to know their risks may be upset if they are given too much information. It is important that you know where you stand and that you let others know your wishes.

Psychological impact

Genetic risk assessment is not completely understood. Having a genetic risk assessment may make you experience a wide range of emotions. You may worry about the impact the information may have on your job, your relationships and on your family. Or, genetic risk assessment might lessen anxiety as you learn more. Genetic counsellors and other healthcare professionals can help you deal with your emotions.

Concerns about children

Research has shown that many people are especially concerned about their children’s inherited risk for developing cancer. It is very upsetting to think that you may have passed on a gene mutation to your child. It is important to remember that through genetics research we are continually improving methods of cancer prevention, detection and treatment, and this will benefit our children in the future. Knowing about an inherited increased risk for developing cancer can help our children become more aware of the importance of preventive and/or early detection measures.

Confidentiality

You may be concerned about who will know about the results of your genetic risk assessment. It is important to know that there are some rules and procedures in place to help avoid the misuse of this information. Your genetic risk assessment will be kept confidential. Information about you or your genetic risk assessment is not released without your written consent. A genetic counsellor can answer your questions and concerns.

Sharing information

You will want to think carefully about telling other members of your family about the results of your genetic risk assessment. Some people have found that the best thing to do is to let their family members know they have had genetic risk assessment and to share the results if their relatives want to know.

Insurance and employment

Should insurance companies ask people who are at greater risk for developing cancer to pay higher health or life insurance premiums? Should insurance companies seek any information about the history of inherited cancer and genetic testing at all? As genetic testing for cancer moves to regular clinical services in Canada, results from the test might be used to predict a person’s future health risks and deny them life insurance or employment opportunities. It is still too early to know how these questions will be answered. You may wish to talk to a genetic counsellor about your rights and responsibilities.

Learning about your family’s health history

One way to learn if cancer runs in your family is to look at your family tree of cancer history. You will need to go back through as many generations as possible and find out which of your relatives had cancer. You will then need to collect as much information as you can about the type of cancer your relatives had and their ages when they were diagnosed with cancer. This may be difficult because medical records were not kept as well in the past as they are today. You may also need to contact health facilities (hospitals and cancer clinics). Genetic counsellors may be able to help you collect this information by providing you with the necessary consent forms so that medical records may be released to you.

Genetic counselling

Once you have obtained a family tree of cancer history it will be studied to see if your family qualifies for genetic counselling or a special research study. At the genetic counselling session you will meet with a genetic counsellor and other healthcare professionals. The genetic counsellor will provide information about genes and how they function and about the specific cancer-causing genes that may have been identified. A genetic risk assessment is provided along with recommendations for cancer screening and/or monitoring. The genetic counsellor will also discuss how genetic testing for cancer may affect you and your family.

Genetic testing

Genetic testing is a scientific process that involves special laboratory procedures. Scientists have recently developed methods of genetic testing to tell if there are changes to a gene. Genetic testing may be able to identify if we carry a gene mutation that puts us at an increased risk for developing cancer long before the cancer actually develops.

Not everyone is eligible for genetic testing. There are several reasons why individuals may not be offered genetic testing. These will be discussed with you at a genetic counselling session.