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.
In a previous study conducted by the same research team in the Journal of Clinical Oncology in 2007, the parents explained the reasons they did or did not share the information. The most common reason for disclosure was to provide the children with information that could increase their health awareness so that they could be tested. Other reasons included providing an explanation of the family history of cancer and to explain a medical intervention that the parent was undergoing. Reasons cited for not sharing test results were that the children were too young, that it might increase the child's anxiety or fear about getting cancer, that it might increase the child's concern about parental health, and that there was no reason to disclose the results.
In the present study, most parents considered the child's age or maturity level when deciding whether to share information about test results. The majority of children older than 14 years and about 50% of those 10 to 13 years were told of their parents' test results; the average age at disclosure was 17.04 years.
The parents noted that younger children more frequently appeared distressed, did not understand the information, and asked questions, and children older than 14 years most frequently appeared concerned. Sons asked questions more frequently and exhibited neutral responses. Distress was more frequently described in daughters; however, the parents also more frequently reported that they found the information more useful than sons.