Having genetic testing isn’t just about gaining information about your own personal risk of cancer. Your results will affect your relatives, too, whether or not they wish to have testing themselves. This can have an impact on family relationships.
When families take a “we’re all in this together” approach, with everyone agreeing on the need for information about the risk of breast cancer (and possibly other cancers), the genetic testing process can strengthen relationships. Research studies have found that the process is more likely to cause positive changes than negative ones.
Some families can be divided, though, and relationships strained. Some relatives might not want the information or question why others would even have the test. Those who choose testing might not understand why others aren’t interested in seeking more complete information about their cancer risk. If some family members test positive for a genetic mutation and share the information, others might resent having to deal with fears they wouldn’t have faced otherwise.
If you have children, another challenge can be figuring out what to tell them about genetic testing and when. Your and your relatives’ results will be important for them to know as they enter adulthood. They might wish to consider genetic testing themselves at that point. Many people struggle with how to deliver this information.
The information below will make you aware of some of the family issues you could face throughout the genetic testing process. Every family is different, of course, but these general tips might be helpful as you navigate family conversations and the impact on relationships.
- Challenges of Gathering a Family History
- Family Emotions During the Genetic Testing Process
- Family Relationships After Genetic Testing
- Sharing Genetic Information With Children and Young Adults
This content was developed with contributions from the following experts:
- Andrea Forman, M.S., L.C.G.C., genetic counselor, Fox Chase Cancer Center, Philadelphia, PA
- Sue Montgomery, R.N., B.S.N., O.C.N., G.C.N., genetic nurse navigator, Fox Chase Cancer Center, Philadelphia, PA
Genetic Testing Stories: Impact on Families
This video series shares the stories of three women who had genetic testing after being diagnosed with metastatic breast cancer and the impact it had on their family relationships.
Brenda's Story: A Surprising BRCA Test Result
Brenda was diagnosed with metastatic breast cancer and had genetic testing for a BRCA mutation. Her siblings came along to her genetic counseling appointment and learned what her unexpected results might mean for them.
Felicia's Story: Genetic Testing Sheds Light on a Family's Cancer History
Felicia had a strong family history of breast cancer and was diagnosed with metastatic breast cancer herself. After her cousins tested positive for a BRCA mutation, Felicia also chose to have genetic testing. Her experience inspired her to become an advocate in the breast cancer community.
Amanda's Story: Choosing BRCA Testing for Her Daughters
Amanda was diagnosed with metastatic breast cancer, and her doctor recommended genetic testing. At first she wasn't sure it mattered, but ultimately decided to be tested to find out if her daughters might be at risk for a hereditary cancer syndrome. Breastcancer.org recently learned that Amanda passed away in February 2020. We are eternally grateful to her for sharing her story and helping to raise awareness about genetic testing and metastatic breast cancer. Our hearts go out to her family and loved ones.
This video series is sponsored by AstraZeneca and was developed in partnership with Sharsheret and FORCE.
Sharsheret, a national nonprofit organization, improves the lives of Jewish women and families living with or at increased genetic risk of breast or ovarian cancer through personalized support and saves lives through educational outreach. While their expertise is in young women and Jewish families as related to breast cancer and ovarian cancer, Sharsheret programs serve all women and men.
FORCE is a national advocacy organization that provides support and resources for people and families with a gene mutation linked to hereditary cancer. Their Peer Navigation Program will match you to a volunteer and personalized resources based on your mutation and personal situation.
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