As a result of the current Federal government funding situation, the information on this website may not be up to date or acted upon.
The NIH Clinical Center (the research hospital of NIH) is open. For more details about its operating status, please visit https://cc.nih.gov.
Updates regarding government operating status and resumption of normal operations can be found at https://www.opm.gov.
|Title:||Toward a new understanding of risk perception among young female BRCA1/2 "previvors".|
|Authors:||Hoskins LM, Roy KM, Greene MH|
|Journal:||Fam Syst Health|
|PMC ID:||not available|
|Abstract:||The quantitative risk of cancer among BRCA1/2 gene mutation carriers is generally well-understood, and can be communicated clearly to potential and known mutation carriers during the genetic risk assessment, education, and testing process. The extent to which individual mutation carriers feel vulnerable to cancer is a more complex dynamic with a powerful effect on risk-management decision-making; however, these decisions are not the products of straightforward personal assessment of one's quantitative probability of being diagnosed with cancer. We undertook this National Cancer Institute study to broaden understanding of the lived experiences of women who learn early in the life course that they carry a BRCA1/2 mutation. Our data indicate that the relationship between perceived risk and risk-management decisions is not direct, that is, several nononcologic components of risk are also integral to women's management decision-making. High-risk women commonly utilize self-perceived cancer risk to shape their decision-making and communication about various tasks of young adulthood, including differentiation from family of origin, establishing a permanent couple relationship, and family formation. Risk-management is also an important domain in which they strive to take control of their lives by actively participating in management choices. By understanding how these complex dynamics fit together, care providers can better guide, counsel, and support high-risk women as they struggle to balance legitimate risk-reduction needs with the desire to live a normal life. Here we present data from our qualitative research to aid in this effort.|