Upon receipt of a genetic test result identifying an inherited cancer predisposition, parents are often most focused on the potential impact of their result for their children and wonder how and when to tell them. This chapter focuses on strategies to help healthcare professionals to prepare patients to discuss genetic test results with their children and extended family members by outlining general communication guidelines, reviewing hereditary cancer communication literature, and identifying patient resources.
After patients receive their positive genetic test result, they are then tasked with the responsibility to share their results with relatives, as well as convey the results in a meaningful and motivational manner.1 However, genetic test results are not always consistently shared within families. Some studies have shown that as many as 20 to 40% of at-risk family members are not aware that a cancer predisposing mutation has been identified in the family.2–6 Prior studies have reported those with a BRCA1/2 mutation were most likely to disclose results to sisters and least likely to disclose results to young children;6,7 mothers were more likely than fathers to communicate their BRCA1/2 test results to children;8 and ethnicity influenced the likelihood of result disclosure, such that African Americans and Asians were less likely to disclose results than both white non-Hispanic and Hispanic patients.9 Overall, the decision to disclose results to family members and who decides to disclose results can vary significantly from person to person and can be influenced by a myriad of compounding factors.
Adult-onset hereditary cancer predisposition syndromes, such as hereditary breast and ovarian cancer (HBOC) and Lynch syndrome, present a unique conundrum for parents since associated cancer risks and changes in medical management are not until adulthood, while inherited cancer syndromes, such as familial adenomatous polyposis (FAP) syndrome or multiple endocrine neoplasia (MEN1 and MEN2), have associated cancer risks and medical management changes starting in childhood. For this reason, predictive genetic testing for adult-onset hereditary cancer predisposition is not recommended for children; thus, some parents may not see the value of informing children about their results of genetic testing until they are older. However, genetic healthcare professionals should explore and demonstrate the importance of parents being upfront and honest with children about the genetic risk information, even though it may not have immediate medical implications. These discussions with patients may ultimately help guide and formalize parental decision-making to disclose their results and potential future implications with their children and other family members.
OVERVIEW OF HEREDITARY CANCER RISK COMMUNICATION LITERATURE
Genetics providers will commonly hear parents ask, “When is the best time or age to inform my children?” A number of studies have examined parental discussions of genetic test results with their children. We provide a summary of several of these studies to highlight some of the observed patterns resulting from parental dissemination of genetic test results. While many parents ...