The ticking time-bomb. Health literacy in the context of genetic risk prediction in familial breast-ovarian cancer; A qualitative study

Mariya Lorke; Laura  Harzheim; Kerstin  Rhiem; Christiane  Woopen; Saskia  Jünger

doi:10.4081/qrmh.2021.9647

Authors

Mariya Lorke
mariya.lorke@uni-koeln.de
Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health (CERES), University of Cologne and University Hospital of Cologne, Cologne, Germany.
Laura Harzheim Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health (CERES), University of Cologne and University Hospital of Cologne, Cologne, Germany.
Kerstin Rhiem Center for Hereditary Breast and Ovarian Cancer, University Hospital Cologne, Cologne, Germany.
Christiane Woopen Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health (CERES), University of Cologne and University Hospital of Cologne, Cologne; Research Unit Ethics, Institute for the History of Medicine and Medical Ethics, Faculty of Medicine, University of Cologne and University Hospital of Cologne, Cologne, Germany.
Saskia Jünger Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health (CERES), University of Cologne and University Hospital of Cologne, Cologne; Department of Community Health, University of Applied Health Sciences Bochum, Bochum, Germany.

Personalised methods of predicting breast and ovarian cancer risk through genetic testing increasingly demand a person’s understanding and critical appraisal of risk-related information, as well as decision-making and acting upon disclosure of a positive test result. The current study aims at understanding health literacy (HL) among persons at risk of developing familial breast-ovarian cancer (FBOC) from a bottom-up perspective—incorporating their viewpoints into the research process. Its qualitative design integrates an ethnographic-narrative approach and findings from 10 narrative interviews with women who have undergone genetic testing, analysed by using reflexive grounded theory. The collected data reveal the entanglement of the women’s perceptions concerning the risk of getting ill, their identity, and their strategies of managing health. The analysis of this interplay provides an empirical basis for approaching HL in its communicative dimension, considering individuals’ understandings of health and illness, and emphasizing the role of critical HL.

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Lorke, Mariya, Laura Harzheim, Kerstin Rhiem, Christiane Woopen, and Saskia Jünger. 2021. “The Ticking Time-Bomb. Health Literacy in the Context of Genetic Risk Prediction in Familial Breast-Ovarian Cancer; A Qualitative Study”. Qualitative Research in Medicine and Healthcare 5 (2). https://doi.org/10.4081/qrmh.2021.9647.