Skip to Main content Skip to Navigation

Exploration de l’expérience vécue et de la mise en sens des enjeux éthiques et psychosociaux lies aux innovations technologiques et thérapeutiques en oncogénétique : une approche critique

Abstract : Genetic testing for cancer, which aims to identify hereditary predispositions to cancer, is a dynamic medical field, where many technological and therapeutic innovations emerge. Scientific progress allows genetic testing to be both less expensive, faster and more efficient, which paradoxically raises new ethical and psychosocial issues, such as the patient’s ability to give informedconsent, or the risk of misuses of genetic testing. These changes led us to explore how lived experience is mobilized in the process of making sense of the ethical and psychosocial issues related to innovations in the field of genetic testing of cancer. This research, anchored in social psychology, is based on a critical approach of health issues, which questions the needs, expectations and constraints of health professionals and patients, and the power relationships that take place both at the interindividual level and, on a larger scale, within health policies. Based on the theoretical notion of lived experience, we aimed to understand how individuals make sense of their world, and more particularly of innovations in the field of genetic testing. Lived experience, necessarily social and socially constructed, has many dimensions, among which we chose to investigate the following three: - A practical dimension, based on the study of doctor patient-relationship, - A knowledge dimension, investigated through the negotiation of expert knowledge and common sense thanks to the social representations theory, - And an emotional dimension, based on the study of the phenomena of emotion regulation and social sharing of emotions.Based on the principles of methodological and data triangulation, our exploration was based on two complementary qualitative studies. The first study aimed to investigate sense making processes related to professional activities and how health professionals working in genetic testing for cancer imagine their future and the future of genetic testing. We led 27 semi-structured interviews with genetic counsellors and clinical geneticists. An Interpretative Phenomenological Analysis (IPA) was performed analyze the data gathered, with the assistance of N-Vivo software. The second study aimed to explore the co-construction of representations related to new uses to genetic testing of cancer, and to investigate the impact of lived experience on the understanding of ethical issues related to genetic testing. We led ten focus groups, based mostly on the resolution of ethical dilemmas, with 18 women who attended at least one genetic counselling consultation, and 21 women who did not have a similar experience. All women were recruited thanks to the online collaborative research platform “Les Seintinelles”, which constitutes a cancer related community of interest.This research allowed us to highlight the social nature of genetic testing of cancer. This medical field is defined by two main goals: allowing carriers of genetic predisposition to undergo preventive measures, and making sense of a family history of cancer. Genetic counselling professionals report a high level of personal involvement in their work and emotion regulation strategies acquired on purpose and based on a strict division between their personal and professional life. The acknowledgement oftheir professional skills and the perceived quality of their relationships with their patients contribute highly to the work-related satisfaction of genetic testing professionals. The doctor-patient relationship is structured by an ideal of non-directivity, which can be questioned by the need to accompany and protect the patients, who are considered as vulnerable. Because of the risks of misuses of genetic testing, the strict legislation related to these practices in France is most often considered as valuable.Clinical geneticists and genetic counsellors are considered the most likely to provide genetic testing within an ethical framework.
Document type :
Complete list of metadata
Contributor : ABES STAR :  Contact
Submitted on : Friday, March 8, 2019 - 3:15:18 PM
Last modification on : Thursday, June 16, 2022 - 9:36:38 AM
Long-term archiving on: : Monday, June 10, 2019 - 12:43:11 PM


Version validated by the jury (STAR)


  • HAL Id : tel-02062066, version 1



Myriam Pannard. Exploration de l’expérience vécue et de la mise en sens des enjeux éthiques et psychosociaux lies aux innovations technologiques et thérapeutiques en oncogénétique : une approche critique. Psychologie. Université de Lyon, 2018. Français. ⟨NNT : 2018LYSE2118⟩. ⟨tel-02062066⟩



Record views


Files downloads