Building the Cancer Family: Family Planning in the Context of Inherited Breast and Ovarian Cancer Risk

Abstract

Deleterious BRCA1 and BRCA2 gene alterations significantly elevate a woman’s risk of developing hereditary breast and ovarian cancer. A simple blood test can identify the presence of a BRCA gene alteration in a patient’s DNA. Increasingly, individuals pursuing genetic testing to identify these alterations are also involved in family planning and parenting young children. However, the challenges unique to BRCA gene alteration carriers of reproductive age are just beginning to be studied. This investigation identifies the influences of family medical histories and genetic testing on reproductive choices and examines the meanings of family planning and parenting in the context of genetic medicine. 23 female BRCA gene alteration carriers of reproductive age were recruited from an urban hospital and an Internet-based support community. Each participant completed an open-ended interview and constructed a medically focused family genogram. Interviews addressed family experiences with cancer, perceptions of cancer risk, and beliefs about family development. Interviews were transcribed verbatim and analyzed using the Listening Guide (Gilligan, Spencer, Weinberg, & Bertsch, 2003) to identify key relationships and meaning structures. Participants had no personal history of cancer. Emergent themes included balancing risk management with family planning, weighing possible advances in cancer prevention with desire for biological children, and anticipating implications of a parent’s carrier status for children. Findings will aid in developing research and clinical protocols to integrate risk management with family planning. Research attention to partners, health care access, and reproductive technologies is considered.