“Naked Genes” as Health Psychological Innovation: A Challenge for Research and Intervention

Abstract

The identification of hereditary breast/ovarian cancer predisposing genes enabled the introduction of genetic testing in clinical practice. This created new psychological scenarios related to the many choices these women face. To explore the psychological effects of BRCA1/2 test on Italian healthy women, the following themes were investigated: childbearing intentions, feelings about the future and future projects, family support, feelings towards children and partners, risk perception, and attitudes towards risk management strategies. The participants were 21 young women (average age 35 years) who had undergone BRCA1/2 testing, recruited from a hospital in a medium city in northwestern Italy. A qualitative approach was chosen to explore these complex and sensitive issues. In depth interviews were developed after a review of the literature. The interviews were transcribed verbatim and were analysed using NVivo9. The analysis of the interviews highlighted overall good adjustment to the test results. However, some women underlined a need for long-term psychological support. The main issues were: awareness of psychological support, managing uncertainty, impact on life planning, childbearing intentions, and choice of prophylactic surgery interventions. These results may enable better understanding of the experiences of Italian women who underwent BRCA1/2 testing in order to develop effective interventions in the area of support and care.

How Could Self-Determination Theory Be Useful for Facing Health Innovation Challenges?

“…This condition makes very flexible the borders between the person with symptoms and the one without symptoms (Konrad, 2005; Nowotny and Testa, 2012). Furthermore, these genetic tests represent a challenge for these women not only from a medical point of view but also from a psychological one (Rania and Migliorini, 2015a). When looking for a way to reduce uncertainty about their level of risk by undergoing genetic testing, women who receive a positive test result are paradoxically occupied in a situation that on the one hand eliminates some worries but eventually adds new ones on the other hand (DiMillo et al, 2013).…”

“…Within this condition, for some individuals, the illness and the risk of illness may become the same (Aronowitz, 2007). For example, “the result of genetic testing leads the individual to identify with the diagnosis of ‘his/her being so’, not something that ‘he/she feels’ or that ‘he/she owns’ but that ‘he/she is”’ (Rania and Migliorini, 2015a, p. 79).…”