Am I required to have genetic testing if I see a genetic counsellor?
No. Genetic counselling involves a detailed evaluation of your family history and family medical records as well as education about hereditary cancer.
Following the initial consultation, some people decide to pursue genetic testing to learn more about the level of cancer risk in their family. Others learn that their family history is not suggestive of an inherited predisposition, or they choose to not pursue genetic testing at this time. These families can still benefit from receiving education about cancer risk, as well as personalized cancer screening and prevention guidelines.
Why is genetic counselling an important part of genetic testing?
There are many different genetic tests, so the counsellor will help each person choose the test that is most appropriate based on their family history and type of information they are looking for. Also, genetic tests that are currently available cannot explain the strong history of cancer in many families. It is important to document the family history in detail so we can provide recommendations for early detection or prevention of cancer, even when genetic testing is not informative. Genetic counselling also addresses important aspects of testing, such as the implications and options for the patient and the impact on family members.
What can I do if I learn I have an increased chance of getting cancer?
There are a variety of options available to people who have an increased chance of cancer based on their family history or genetic testing results. These include increased screening or monitoring, chemoprevention – including medications that reduce the chance of cancer – and risk-reducing surgery. For people who have cancer, the results of genetic testing can sometimes affect the treatment plan.
I’ve already had cancer. What can I learn from genetic counselling?
People who have already had cancer may learn about steps they can take to detect or reduce the chance of other cancers. For example, Lynch syndrome can be associated with an increased chance of Endometrial/Colon cancer.
Genetic counselling will also provide information about whether other family members have an increased chance of developing cancer. There are steps they can take to detect cancer early or prevent it from occurring.
What about insurance discrimination and confidentiality?
The Disability Act 2005 prevent insurers from using genetic testing results to discriminate against individuals.
Part 4 of the Disability Act provides safeguards for the use of information obtained from genetic testing. The provisions aim to ensure that people who may be affected by genetic disorders will not be subject to any unreasonable requirements from an employer or an insurance or mortgage provider. The protections provided are in addition to substantial safeguards for the use of personal information contained in the Data Protection Acts.
The safeguards provide that:
- genetic testing may only take place with a person’s consent, in accordance with the Data Protection Acts
- the results of a genetic test can’t be used in relation to insurance, a mortgage, a personal pension or employment
- the person being tested must be made aware of the intended use of the test results and must, as far as possible, be informed about the possible outcomes of the test
- the use of a person’s family history for insurance purposes may be regulated by the Minister after consultation with other relevant Ministers, the Data Protection Commissioner and other interested bodies or groups
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