“Women from families with hereditary breast and ovarian cancer (HBOC) generally receive support services to assist with cancer surveillance and/or risk reduction following the receipt of a positive BRCA1/2 test result. In contrast, women who test negative for the identified family mutation (true negative) are assumed to be relieved and are not typically provided with further services. Their cancer risk is reduced to approaching that of the general population and they are expected to adjust their risk perception and surveillance practices accordingly,” according to a contributed paper by Kim Rainey, Arcadia University Genetic Counseling student,  at the National Society of Genetic Counselors’ (NSGC).

The Experiences of Individuals who Receive True Negative Results from BRCA Testing: A Qualitative Pilot Study was authored by K. Rainey1, K. Valverde1, M. Corbman2. (1Arcadia University, 2 Fox Chase Cancer Center.)

“Few studies have investigated the experiences of this population. This qualitative pilot study identified common experiences and reactions to undergoing genetic testing by women who receive a true negative result. Sixteen women from the Family Risk Assessment Program at Fox Chase Cancer Center were interviewed and their responses were analyzed for common themes.

“The majority expected to receive a cancer diagnosis at some point. They approached genetic testing with a high level of distress, were proactive in their risk reduction planning, and were surprised by their test result. The majority continued to be concerned about their risk for cancer and some worried about their reduced cancer screening. Overall, their outlook for the future was positive.

“Self-identity was the core category that emerged using grounded theory. Self-identity as reflected in cancer risk perception, acceptance of the test result, and outlook for the future was explored. Analysis revealed a shift in self-identity following a true negative result for BRCA1/2. The disconnect between the continued fear of cancer and the positive outlook for the future indicated difficulty embracing the new self-identity. Genetic counselors can assist this population by normalizing their unsettled reaction, discussing strategies to reduce anxiety during testing, promoting communication within the family, and offering support groups.”