Decision-making among individuals at risk for Hereditary Breast and Ovarian Cancer syndrome (HBOC)

Abstract

Background: Risk assessment through genetic counseling and testing (GC&T) are offered to individuals who meet criteria associated with hereditary breast and ovarian cancer syndrome (HBOC). Individuals who know of inherited cancer risk are often gatekeepers of inherited risk information to blood-related relatives. However, upwards of 59% offered GC&T may choose not to undergo genetic testing. Current literature highlights how at-risk individuals receiving care at large, academic medical centers in urban areas experience and make decisions around GC&T. A critical gap exists in understanding the decision-making process of individuals with HBOC offered genetic testing in rural settings. Methods: A social constructivist, grounded theory approach was conducted within a rural area of the Northeast region of the United States. Participants were eligible if they were a) at least 21 years old, b) had been offered genetic testing, c) did not seek medical care at a large, academic urban medical center, and d) were able to speak and understand English. Purposive sampling and data analysis were completed using grounded theory methods as outlined by Charmaz (2014). Results: Thirteen participants with an HBOC associated cancer diagnosis were included in the analysis. Interviews ranged in length from 60 to 90 minutes. Participants described the shifting of self during the decision-making process in utilizing genetic testing. Three theorizing categories were identified: waiting in limbo, wanting answers, and having expectations. Conclusions: The results from this study are useful in describing the decision-making process in genetic counseling and testing from the perspective of individuals with HBOC residing in rural environments. Continued research efforts should be dedicated to understanding this complex, multi-faceted decision and how it will help guide practice, policy, and research initiatives.