Session Information
SES F 07, Paper Session
Paper Session
Contribution
Genomics have changed the culture of modern health care systems on a global scale by allowing individuals to know about their future health through providing new medical analytical tools (EuroGentest 2006). The resulting certainty about one’s future changes the individual’s self-perception: usually having both positive and negative psychological and social consequences (Broadstock et al. 2000; Michie et al., 2002), outcomes of genetic tests often have a large impact on the clients’ lives (Decruyenaere et al. 2000).
This paper describes developments of the self (processes of Bildung) resulting from the decision on predictive genetic testing for hereditary diseases, and illustrates how and when decision-making processes can be understood as such: the acquisition of genetic knowledge can pose a challenging situation – or crisis – for the individual, requiring a change in her behavioural patterns. As Kokemohr (2007) and Koller (2003) describe, individuals interact with their environment to appropriately deal with new situations – they pass through a process of a development of the self (Bildung). According to Nohl (2006), development of the self (Bildung) can be modelled as a spontaneous process consisting of sequential stages. Scully, Porz & Rehmann-Sutter (2007) have shown that certain decision-making processes in genetic testing resemble a sequence of micro-decisions where small decisions lead up to the choice for or against the acquisition of genetic knowledge.
The analysis of the empirical cases collected for this study indicates that some decision processes for genetic testing consist of collections of step-by-step decisions that are deeply interconnected and do not follow only a linear sequence. Sequential micro-decisions fail to explain the dynamics of these processes. Thus, this paper proposes to map individuals’ interactions with their environment in form of a topology whose changes reflect the client's decision steps. The term topology is used here according to the definition of Waldenfels (2007, 75f.) – it aims to illustrate the relationship of proximity and distance in the personal lifeworld (Lebenswelt) (comp. Klitzman et al. 2007). Every step is based on previous experiences made by the client. Only this back reference then enables his to manage the challenging situation successfully. Therefore, the client engrafts steps of his and others´ experiences into his own personal network. When one of these steps is changed by new knowledge or is interpreted in a new way (Bildung), the step-by-step decisions can change direction and modify the whole topology.
The proposed topology – or network of experiences – describes how individuals decide and how their self-perception changes. This helps decide whether an individual process of decision-making for genetic testing can be understood as a development of the self (Bildung). Unravelling the individual’s challenge and her resulting development, and mapping this development in form of a topology helps understand the implications for society: in reaction to the cultural change induced by genetic testing, society needs to develop new ways of dealing with genetic knowledge and its consequences for both individuals and society.
Method
Expected Outcomes
References
Broadstock, M (2000). Psychological consequences of predictive genetic testing: a systematic review. Eur J Hum Genet, 8,10, pp. 731-738. Decruyenaere, M et al. (2000). Predictive testing for hereditary breast and ovarian cancer: a psychological framework for pre-test counselling. Eur J Hum Genet, 8,2, pp.130-136. EuroGentest (2006). Summary of the guidelines for genetic counselling. Access: http://www.eurogentest.org/web/files/public/unit3/summaryofguidelinesMay06.pdf, 2009, March 30. Fischer-Rosenthal, W, Rosenthal, G (1997). Warum Biographieanalyse und wie man sie macht. ZSE, 4, pp 405-427. Klitzman, R (2007). The roles of family members, health care workers, and others in decision-making processes about genetic testing among individuals at risk for Huntington disease. Genetics in Medicine, 9,6, 358-371. Koller, H-C (2003). Bildung and Radical Plurality: Towards a Redefinition of Bildung with Reference to J.-F. Lyotard. Eucational Philosophy and Theory, Special Issue Bildung, 35, 2, pp 155-166. Kokemohr, R (2007). Bildung als Welt- und Selbstentwurf im Anspruch des Fremden. Eine theoretisch-empirische Annäherung an eine Bildungsprozesstheorie. In: Koller, H-C, Marotzki, W, Sanders O (eds.). Bildungsprozesse und Fremdheitserfahrung. Beiträge zu einer Theorie transformatorischer Bildungsprozesse. Bielefeld, pp. 13-68. Nohl, A-M. Bildung und Spontaneität. Phasen biographischer Wandlungsprozesse in drei Lebensaltern – Empirische Rekonstruktionen und pragmatische Refelxion. Opladen. Schütze, F (1983). Biographieforschung und narratives Interview. Neue Praxis, 13, pp 283-293. Schütze, F (1987). Das narrative Interview in Interaktionsfeldstudien. Hagen. Scully, J L, Porz, R, Rehmann-Sutter, C (2007). "You don´t make genetic test decisions form one day to the next" - using time to preserve moral space. Bioethics, 21, 4, pp 208-217. Waldenfels, B (2007). Topographie der Lebenswelt. In: Günzel, Stephan (ed.). Topologie. Zur Raumbeschreibung in den Kultur- und Medienwissenschaften. Bielefeld.
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