Should you tell your children they have increased cancer risk?
PHILADELPHIA, PA—Should you tell your children they have increased cancer risk? According to a new study, the answer is “yes.” The majority of parents who are tested for BRCA1 and BRCA2 genes share those results with their children. In addition, many parents even discuss the results with very young children. The study was published online on January 9 in the journal Cancer. The BRCA1 and BRCA2 genes indicate an increased risk to both breast and ovarian cancer.
The study group was comprised of 253 parents who completed a telephone interview. The average time from the receipt of the genetic test result to the interview was 21 months; the parents had a total of 505 children younger than 25 years. They noted that, when informed of the test results, most of the children did not appear to be distressed. The most frequently reported responses to test results were neutral (41%) and/or happiness/relief (28%); however, some parents reported that their children were concerned (13%) for their parents, themselves, in general, or for other family members. A small percentage (11%) reported that their children expressed distress (were upset, scared, avoidant, or fatalistic) in response to being told the news. About 7% of the parents noted that their children did not seem to understand the information; 5% asked questions or were curious (5%); and 4% appreciated the information or found it useful.
"The effect on telling children is still unclear, and the optimal age for discussing genetic test results is also still unclear," noted lead author Angela R. Bradbury, MD, assistant professor in the Department of Clinical Genetics at the Fox Chase Cancer Center in Philadelphia, Pennsylvania. She added, "While outcomes and optimal age remain unclear, many parents are facing the decision now and electing to share… For many, this is not a negative experience — at least by parent report."
Overall, 66% of the children were apprised of the test results. Factors significantly affecting the parents' decisions to disclose the findings to children included the child being older, the child being female, the test result being negative, and the parents having only a high-school education. The researchers reported that the age of the child was significantly associated with parental disclosure to offspring. Being female was significantly associated with test disclosure for parents who tested negative, but not for parents who tested positive for the BRCA1/2 gene.