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Should Parents Share The Results Of Genetic Testing With Their Children?

Posted on: Friday, 15 May 2009, 08:54 CDT

If you learned that you were at high risk of cancer because you carry the hereditary BRCA1/2 gene mutation, would you tell your children? A recent study at Fox Chase Cancer Center not only considered that question, but also took it to the next level and studied the parent perceptions of the impact of such a decision on children. The study will be presented at the 2009 Annual Meeting of the American Society of Clinical Oncology. BRCA1/2 are hereditary gene mutations that indicate an increased risk of developing breast cancer.

"We know that many people who carry the BRCA1/2 gene mutation share their genetic test results with their children," explained Angela Bradbury, MD, medical oncologist at Fox Chase and lead author on the study. "What we did not know was the impact this communication has on their children."

In order to learn the impact this has on children, researchers evaluated results from 163 parents who had BRCA1/2 testing . Of those, 52 tested positive for BRCA1/2. Just over 100 parents (66 percent) shared their results with at least one of their children, which totaled 323 children who were between the ages of 5 – 25. The child's age and parent cancer history had a direct correlation to whether or not they shared the results. Not surprising, those without a BRCA1/2 mutation were more likely to communicate test results than parents with a mutation.

Among parents who disclosed their results, few reported negative reactions from their children (9 percent) or that their child did not understand the information (11 percent). Overall, most parents reported that their children handled the information well, although negative reactions were more frequent among certain subgroups (younger children and those of parents with a mutation or a variant of uncertain significance).

"Many parents share genetic test results with their children," said Bradbury. "According to our research, most parents do not perceive their children to have adverse reactions to this information, although children who learn their parent tested positive for the

BRCA1/2 mutation or a variant of uncertain significance may be more susceptible to initial negative reactions. We certainly need to learn more about how children respond to this information."

Further research with parents and children will be done to explore psychosocial and behavioral responses to learning of hereditary risk during childhood and adolescence, and to inform the development of interventions to optimize adaptive responses to early communication of genetic risk.


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