Joining FORCES is the FORCE newsletter with news, views and supportive information for individuals concerned about hereditary breast and ovarian cancer.
by Tracy M. Diaz
After testing positive for a BRCA mutation, experts recommend that people communicate their results to adult family members. Facing hereditary cancer, undergoing genetic testing, and pursuing risk management options can be a stressful process for entire families, especially when young children are involved. Although experts recommend against genetic testing of minors, children are frequently aware of the serious and inherited nature of cancer in their families.
Dr. Angela Bradbury at Fox Chase Cancer Center studied how children respond when told of a parent's mutation status. In her study, a total of 253 parents participated in a telephone interview. All participants received genetic counseling before and after their BRCA testing, which occurred while they had at least one child under the age of 25. Their test results were categorized as either true negative (6% of participants), true positive (29% of participants), uninformative negative (57% of participants), or a variant of undetermined significance (VUS) (9% of participants). True negative refers to individuals who tested negative for a known mutation identified in the family, while uninformative negative refers to participants who tested negative and belong to families without a known mutation. VUS refers to an identified gene change with an unknown effect on cancer risk.
Most parents (84%) informed their children within one month of learning their test result. The majority of children over 14 years old were informed, while about half of children between ages 10 and 13 were informed. When children heard the test results, most of their reactions were neutral (41%) or relieved (28%). Those who expressed relief and happiness (28%) had been told of a parent's negative result. A smaller percentage of children felt concern (13%) or distress (11%) distress was more common when results were positive or VUS. Some parents reported that children did not understand the information (7%), asked questions or seemed curious (5%), and/or appreciated the information and found it useful (4%).
This is the largest study to explore communication of BRCA test results between parents and their children. The study found that most parents share results with their children, and that the majority of children do not find this information distressing. Other findings include:
Tracy M. Diaz is a doctoral graduate student in the Cancer Biology program at UT Southwestern Medical Center in Dallas, TX. She researches cancer vaccines and enjoys doing volunteer work in her free time. She is also a BRCA2 mutation carrier.
Bradbury AR, Patrick-Miller L, Egleston BL, et al. "When parents disclose BRCA1/2 test results: Their communication and perceptions of offspring response." Cancer, January 9, 2012. Epublished ahead of print.