Challenges and Ethical Implications in the Development of Guidelines for Neuro-stimulation: Participatory Design for Indirectly Affecting Measures


When developing measures that affect a specific group, including group representatives is to be understood as ethical, since it empowers people to influence their own living environment. Participatory design, positions itself against an ‘expertocratic decision-making sovereignty’ thus enabling marginalized groups. However, this approach is difficult to apply in all steps of the process since the technical realization often requires expert knowledge. To work around that, prototypes are usually used, to simulate the measures and to collect feedback to rework them before they are rolled out. In the development of treatment guidelines, which are directed to experts who apply them on their patients, this cannot be done. Guidelines cannot be simulated by prototypes, since they are affecting indirectly. In result, an ethical claim is threatened, as the concerned group has little influence on the outcome. In the STIMCODE project, we reflect on this and address it by creating a link between the affected persons and the expert committee formulating the guidelines. Methodically, we held workshops with the concerned group, in which we collected rich insights, to processed them into personas. These acted as ‘representatives’ in the formulation of the guidelines. Beyond this methodological approach, we considered the importance of the attitude of the involved designers in doing the ‘translation’ between the patients and expert committee. We want to close our paper with an outlook on how an ethical claim can be systematized and formulated more clearly in terms of design methodology and therefore could be transferred to similar projects.


Johannes Breuer
Research Associate, Co-Design and Transfer Strategies, Fraunhofer IAO / CeRRI, Berlin, Germany

Marie Lena Heidingsfelder
Researcher and Team Lead, Fraunhofer CeRRI, Germany


Presentation Type

Paper Presentation in a Themed Session


Design in Society


Participatory Design, Medical Treatment Guidelines, Design Ethics, Persona, Workshop

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