Genetic test results for cancer-associated gene mutations affect more than the person being tested, they have implications for that person’s entire family. Communicating your genetic test results with family members is important because they may share the same genetic mutation and this information can aid in healthcare decision making for the entire family.
Before the Test
If possible, let family members know you’re being tested beforehand. Explain why you’re being tested, whether it’s because of a family history of cancer, an ethnic susceptibility to cancer due to a genetic condition, or your personal medical history.
Explaining why you’re being tested can help prepare your family for the genetic test results. This is also a great opportunity to gain more insight into specific medical conditions or diseases that are present within your family. Steps on how to gain this information are listed below.
How to collect your family’s health history:
1.) Talk to your family members.
2.) Ask questions, with emphasis on types of cancer and ages of diagnosis
3.) Record the Information.
4.) Share the information with your doctor and other family members.
Your family medical history can provide powerful insights into your risk of developing certain diseases.
If Genetic Test Results are Negative
Negative genetic test results indicate that you do not carry the specific genetic mutation(s) tested for, however it doesn’t indicate that you are free from cancer risk or that other family members do not need to be tested. It is common for some family members to test positive for a genetic mutation while other family members may not carry the mutation. It is also common for cancer to be present within a family in which a genetic mutation is not the cause. Negative test results are valuable as they help to determine an individual’s cancer risk and can aid in the healthcare decision process. It is important to share test results with family members, even if results are negative.
Revealing Positive Genetic Test Results
Positive test results indicate that you carry an inherited genetic mutation that increases your personal risk of developing cancer and indicates that family members are at risk for carrying the same mutation. Positive test results may explain why certain cancers are present in your family, knowing and sharing these results can be empowering because they provide answers and an opportunity for medical intervention. When sharing positive genetic test results, be prepared for a range of emotions from your family: acceptance, relief, hope, understanding, denial, grief, confusion, anger, and guilt are all common.
You should be sure to share your genetic test results with all your family members, especially your first-degree relatives (siblings and parents), and suggest that they speak with a health care professional with knowledge in cancer genetics and undergoing testing themselves. Provide them with a copy of your genetic test results which includes the name of the specific gene or genes, and the name of the specific gene mutation. If anyone chooses not to be tested, respect their wishes, as it is a choice they need to make.
Every family is different, and some relatives may have strong feelings, though everyone benefits from knowledge and genetic insights. To aid in talking about genetic testing with your family, consider speaking to a genetics professional as they have tools and tips on how to engage in a genetics discussion with those you love.
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