Parent-of-Origin Effects on BRCA+ Women’s Management of Hereditary Cancer Risk
We conducted a mixed methods study that starts with an online survey of 457 BRCA+ females followed by 57 in-depth qualitative interviews. We explore the role family inheritance plays in cancer risk management. There exists a lack of understanding that men can get hereditary breast cancer as it is thought to be such a rarity. Parent-of-origin plays an essential role — only second to age and more important than mother/father’s cancer history — in deciding BRCA+ women’s style of cancer risk management. Daughters inheriting the BRCA+ genetic mutation from fathers face unknown cancer risks. Those daughters who inherit the genetic mutation from their father are genetically tested later in life and are more prone to being diagnosed with cancer and then tested. They have a reactive medical decision making risk management style. Moreover, daughters who inherit the genetic mutation from fathers have a significantly higher rate of cancer than those who inherit this genetic from mothers and score significantly lower distress related to BRCA testing and express a pro-active risk management style. In addition, our study found that proactive decision-making pathways brought significant psychological benefits in BRCA+ women’s responses the test results as measured by MICRA.
Proactive and Reactive: The Role of Communication in Paternal-Line BRCA+ Women’s Risk Management
What makes the difference between a BRCA-positive women’s experience of her predisposition when inherited from her father as opposed to her mother? It has been statistically theorized that women inheriting the mutation from their father are more likely to have more advanced forms of cancer and other serious health repercussions, but why is this? Some research suggests that there may be genetic factors at play, but this study entertains and explores the possibility that psychosocial factors and deeply ingrained societal scripts which dictate women’s journeys to both discover their BRCA mutation and react accordingly may be at fault. This is evidenced in pitfalls of communication noted from the personal to the institutional level. Our study has undertaken the task of qualitatively exploring these women’s narratives and examining emerging communication themes that shed light on how women inheriting their mutation from the paternal line may differ in health outcomes from their maternal-inheriting counterparts. We aimed to get at the scope of women’s lived experience in inheriting the mutation from their father through 56 in-depth interviews, and in doing so unearthed a distinct difference between this group and those inheriting from mothers: reactive versus proactive experience.