Parents face challenges when deciding the best time to tell children that they may be at high risk for cancer
https://www.facingourrisk.org/XRAY/telling-children-about-risk
Full article: https://www.nytimes.com/2017/04/20/well/family/when-to-tell-daughters-about-a-genetic-breast-cancer-risk.html
When certain types of cancers run in families, genetic testing can determine whether the cause is hereditary. Genetic testing can help family members understand their cancer risk and make medical decisions to stay healthy. A test result can provide significant insight, but it also creates challenges for parents, because gene mutations that cause hereditary cancers can be passed from mothers and fathers to sons and daughters. People with these mutations must make difficult decisions about when to tell their children that they too may have inherited the mutation. (8/22/2017)
Expert Guidelines
The National Comprehensive Cancer Network (NCCN) establishes guidelines for people with an inherited mutation associated with cancer. NCCN recommends against genetic testing in children younger than 18 years when results would not impact medical management.
The American Academy of Pediatrics and the American College of Medical Genetics and Genomics developed a policy statement which represents recommendations developed collaboratively with respect to genetic testing and screening in children. The policy recommends:
- Decisions about whether to offer genetic testing and screening should be driven by the best interest of the child.
- Genetic testing is best offered in the context of genetic counseling. Genetic counseling can be performed by clinical geneticists, genetic counselors, or any other health care provider with appropriate training and expertise.
Specifically with regards to predictive genetic testing (e.g. testing for genes associated with cancer risk) the panel recommends:
- Parents or guardians may authorize predictive genetic testing for asymptomatic children at risk of childhood-onset conditions. Ideally, the assent of the child should be obtained.
- Predictive genetic testing for adult-onset conditions generally should be deferred unless an intervention initiated in childhood may reduce morbidity or mortality. An exception might be made for families for whom diagnostic uncertainty poses a significant psychosocial burden, particularly when an adolescent and his or her parents concur in their interest in predictive testing.
- For ethical and legal reasons, health care providers should be cautious about providing predictive genetic testing to minors without the involvement of their parents or guardians, even if a minor is mature. Results of such tests may have significant medical, psychological, and social implications, not only for the minor but also for other family members.
Questions To Ask Your Health Care Provider
- How do I tell my children that they may be at higher risk for breast cancer/may carry a BRCA mutation?
- At what age should I tell my daughter that she may carry a BRCA mutation?
- At what age should I tell my son that he may carry a BRCA mutation?
- What signs should I be aware of that indicate my children may not be coping well with information about breast cancer risk?
- My child is showing signs of stress since we discussed cancer risk—are their resources to help him/her?
- Can you refer me to a child psychologist who has experience working with hereditary cancer families?
About FORCE
FORCE is a national nonprofit organization, established in 1999. Our mission is to improve the lives of individuals and families affected by adult hereditary cancers.