Parent–child factors and their effect on communicating BRCA1/2 test results to children

Abstract

The purpose of the present study was to evaluate the likelihood and the effect of parent–child factors on communicating about maternal genetic test results for breast/ovarian cancer risk. Subjects were 42 mothers enrolled in a hereditary breast cancer research program who reported on their interactions with 68 target children. Predictor variables (demographic, clinical, and psychological) were assessed at baseline after mothers participated in a comprehensive genetic counseling/education session and provided a blood sample for BRCA1/2 mutation analysis. Maternal communication of test results to children was assessed 1 month after mothers learned their mutation status. The rate of disclosure to pediatric-age children was 53%. Older children were more likely to be informed of their mothers’ test results than were younger children. Maternal disclosure of genetic test results to children was also more likely to occur in the presence of more open parent–child communication styles, though the act of disclosing did not appear to impact communication style. These findings suggest that in addition to developmental phase, family behavioral interactions and communication styles are strongly predictive of whether or not mothers choose to share cancer genetic risk information with their children.

Introduction

Breast cancer is the leading cause of cancer deaths among women ages 40–59. This year alone, nearly 200,000 women will be diagnosed and almost 50,000 will die as a result of the disease [1]. In the wake of these figures are the lives of family members who, though not diagnosed themselves, remain strongly affected by the illness and its treatment course. In particular, children of parents with cancer may be at risk for a variety of psychosocial morbidities, including depression, anxiety, and other adjustment problems [2], [3], [4]. Unfortunately, news that a parent has been diagnosed with breast cancer may also bring with it other threats to parent–child well-being, such as the possibility that the child him- or herself could be at increased risk for similar cancers upon reaching adulthood.

Though the majority of women with breast cancer have no significant family history or other known risk factors, 5–10% of breast cancers are attributable to the effects of major cancer susceptibility genes. Mutations in the BRCA1 and BRCA2 (BRCA1/2) genes account for most hereditary breast/ovarian cancer cases. In such families, gene mutations are transmitted from generation to generation in an autosomal dominant fashion, meaning that children of a parent with BRCA1/2 mutations have a 50% chance of also carrying the same mutation. However, as breast cancer in children is exceptionally rare and no medical interventions exist for pediatric-age children found to be gene carriers [5], direct testing of children prior to the age 18 for BRCA1/2 mutations is contraindicated due to a variety of medical, ethical, and psychological concerns [6].

Parents’ decisions to share their test results with their pediatric-age children are also complicated and little is known about their motivations for doing so. Whereas some parents attempt to reassure children about parental health by providing them with information about cancer and cancer risks, others do not wish to evoke unnecessary alarm among their children over predictive testing findings that may be difficult to interpret. The scant amount of data available on this topic suggests that approximately 50% of tested mothers choose to disclose their BRCA1/2 mutation status with a child under the age of 19 [7]. Parent psychological distress appears to promote such disclosure, though disclosure itself does not alleviate parental distress [3]. This leaves open the possibility that altered parent–child functioning could occur as a result of sharing upsetting genetic testing news, as several generations of family members have probably been affected and multiple losses have occurred as a result of cancer. Thus, BRCA1/2 testing raises critically important questions for parents and providers about the process and content of communicating with children about cancer risks, and the impact of these communications on parent–child well-being.

In light of these issues, the goals of the present study were to: (a) further describe the communication behaviors of mothers and their children regarding maternal genetic testing for breast cancer risk, (b) identify parent–child predictors of disclosure in a clinical research setting, and (c) evaluate the outcomes of parents’ communication decisions. It was hypothesized that mothers would be more likely to share their test results with daughters than sons, as females are more likely to develop breast cancer than are males. We also suspected that disclosure would take place with older children rather than younger children, as parents may view older children as being more equipped to understand and cope with this type of information. It was further hypothesized that mothers would be more likely to disclose their test results to children with whom they reported fewer negative parent–child interactions and more open communication styles, as disclosure of one’s genetic testing status is likely affected by the quality of one’s relationship with individual family members. Finally, we expected that mothers who shared news that they were carriers of BRCA1/2 gene mutations would subsequently report greater strain in their relationships with their children.