Caiata Zufferey, Maria and Aceti, M (2021) Beyond medical logic. Analysis of the trajectories of genetic cancer risk management in relation to the life trajectories of asymptomatic women carrying the BRCA1/BRCA2 gene. In: Social Justice in Times of Uncertainty. Conference of the Swiss sociological association, 28-30.6.2021, Genève, Switzerland. (In Press)
Full text not available from this repository.Abstract
For approximately 20 years, genetic tests have been used to verify predisposition to breast and ovarian cancer by looking for the presence of a mutation in the BRCA1 and BRCA2 genes. For women who carry the mutation, there are international recommendations on how to minimize the risk of disease: to follow an intensive and regular surveillance from the age of 25, to remove the ovaries once the family project is completed (but in any case, before the age of 40) and to evaluate the possibility of preventive breast surgery. The discovery of the mutation thus invites the women to manage the risk, a risk that can be described as "chronic,” since it is expected to persist until the end of life. Given its long-term nature, risk management may be thought of as a trajectory, i.e. as a work that takes place over time to prevent, delay or alleviate the emergence of the disease. But how does the risk management trajectory intertwine with the person's life trajectory? This question will be examined based on a corpus of qualitative data, collected in the French-speaking part of Switzerland, from asymptomatic women who have been identified as carriers of the BRCA1/BRCA2 mutation through a genetic test carried out in a hospital setting. Thirty-five women, aged between 24 and 72, were interviewed: 28 women participated in an individual interview during a study on genetic risk management conducted by one of the authors between 2011 and 2014; 7 women provided their testimonies during individual interviews (N=4) and mini focus groups (N=3) conducted by the other author during the year 2020 as part of the CASCADE and DIALOGUE studies, which are carried out by a team of interdisciplinary researchers and a consortium of geneticists from various hospitals in Switzerland. The data were transcribed and analyzed using the constant comparison method. A diachronic visualization tool for hereditary cancer risk management was created to explore the correlations between the course of risk management actions and the stages of the life trajectory. Current analysis suggests that long-term risk management is strongly linked to the dimensions of life in relation to couple formation, birth and parenthood issues. Other dimensions, such as female identity, relationship to the body, level and type of education, or the degree of professional stability influence the decisions to be made, as they evolve over the life course. Finally, this paper argues that it is impossible to understand the modalities of genetic risk management without examining the social, emotional and relational situations that shape the decisions in life trajectories of the women involved.
| Item Type: | Article in conference proceedings or Presentation at a conference (Speech) |
|---|---|
| Subjects: | Social studies |
| Department/unit: | Dipartimento economia aziendale, sanità e sociale > Centro competenze pratiche e politiche sanitarie |
| Depositing User: | Maria Caiata Zufferey |
| Date Deposited: | 23 Jun 2021 06:18 |
| Last Modified: | 17 Oct 2023 10:00 |
| URI: | http://repository.supsi.ch/id/eprint/12603 |
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