Sharing Genetic Test Results
Hester Hill Schnipper, LICSW, OSW-C Program Manager, Oncology Social Work
APRIL 04, 2017
One of the reasons to think carefully and clearly about genetic testing is the possible need to share the results with your family. Most people are partly motivated to have testing because of concerns about their children; we hope very much not to have passed on a genetic mutation (e.g. BRCA1 or BRCA2) that may put them at risk later in their lives. Many people, however, haven't given much thought to their extended families and the fact that, if the results are positive, there is a moral imperative to share the information.
Just because you haven't been in touch with your first cousin since you were in elementary school does not mean that you don't still share the genetic history. When personal/family histories are taken prior to genetic testing, the questions include those family branches. If you have testing, and I surely hope that you do, in a setting with genetic counselors, they will talk with you about this issue. Many places have form letters to share that you can edit and send if that turns out to be the simplest way to reach your relatives.
Thinking about sharing the information with your children is usually more straight-forward although it is smart not to burden them with this information before they are old enough to understand and deal with it. Learning of a genetic mutation is not a medical emergency, and the usual recommendation is to wait until your children are in their late teens--at least. No one would suggest that a younger daughter think about prophylactic mastectomies or having her ovaries removed, and the usual guideline is waiting until 35 for any surgery.
If a daughter does test positive for BRCA, it means that she should begin to work with a high risk center and probably have annual mammograms and breast MRIs, beginning at age about 30. This will be a conversation for her and her doctor. There are incredible advances being made, and it is now possible to test embryos for mutations; this means that the mutation can stop with the generation next having children.
This is an excellent piece from CancerNet:
How to Share Genetic Test Results With Family
As precision medicine and genome mapping become more common, some people—many with family histories of hereditary cancers—choose to be tested for known cancercausing gene changes, called mutations. Mutations in genes like BRCA1 identify the potential that a person may develop some cancers, like breast or ovarian cancer, and knowing that the mutation is there can help the cancer care team choose treatments if cancer is ever diagnosed.
It’s important to become knowledgeable about the science and about how ideas, or hypotheses, can eventually develop into treatments for patients. If you have a strong family history of cancer, you may choose to meet with a genetic counselor and have genetic testing to learn about your own cancer risk. When genetic test results are positive, it means that a mutation is present and that your cancer risk is higher. If you receive a negative test result, it means that you do not have a specific gene mutation. Genetic counselors are there to help people understand their test results. However, be aware that the results of these tests also affect your family members.