The following question was addressed by Dr. Lora Thompson, a Clinical Psychologist at the Moffitt Cancer Center:
Q. How do I talk to family members about my genetic test results?
A. The ability to share risk information with family members is a common reason why many individuals undergo genetic testing. Family members may feel appreciative of the information so they can have the opportunity to learn about their personal risk of cancer and to consider cancer prevention and surveillance strategies. However, when others disagree with your decision to undergo testing, being the “gatekeeper” of genetic information can be a burden. Research on genetic test result disclosure has found that less open communication was associated with higher levels of distress in individuals undergoing genetic testing, even when their results were negative.1
Below are some tips for communicating results:2,3
- Before receiving your result, begin thinking about how, when, and with whom you will share the information.
- Be sure that you have a good understanding of what your result means. This may be especially important if you receive a positive or uninformative result.
- Ask your genetic counselor to help you prepare a letter or information sheet that you can provide family members.
- Practice what you plan to say and anticipate what questions you might receive.
- Have a trusted individual available for support.
Some families may still experience tension during the sharing process even when the tested individual practices good communication skills. In this case, consider seeking additional help from a professional with expertise in working with families, such as a psychologist, social worker, or licensed counselor. Remember that your responsibility after receiving your genetic test result is to pass on information. It is up to each family member to decide how to react emotionally and whether to pursue genetic counseling and testing.
1. van Oostrom, I, et al. Clin Genet 71, 35-42 (2007). 2. DeMarco, TA, et al. Breast Disease 27, 127-136 (2007). 3. Seymour, KC, et al. J Genet Counsel 19(4), 330-342 (2010).