In recent years the biomedical system has lived through important changes, in particular concerning doctor-patient relations. We chose informed consent as concrete setting to observe and analyse these transformations: we understand informed consent as a space in which the question of “adequate” information and possibilities of decision-making are negotiated. Increasingly, there is also a trend for regulation in the field of medical, non-therapeutic research. This opens news types of questions, which have so far been neglected by social science research.
In the framework of this project we aim at establishing a transdisciplinary space in which informed consent will be reflected from different perspectives under particular consideration of the context. We want to investigate how the different types of information are understood and negotiated, what concepts of the body are performed, the ways in which the relation of biomedicine and society is regulated and how this has an impact on clinical practice. The following three aspects are central:
- The patients’ perspective: How do patients confronted with informed consent procedures perceive the received information and how do they relate it to prior experiences?
- The practice of informed consent in the clinic: Here we give voice to different actors involved in the process (doctors, nurses, members of ethics committees, researchers, etc.).
- Working transdisciplinary: The reflection of the cooperation between researchers from different disciplines (medicine, social sciences and humanities) on the one hand and with non-scientific actors (patients, nurses, patients’ representatives, etc.) on the other hand is the aim of this part of the project.
We participate in the informed consent process carried out between patients at the Department of Reconstructive and Plastic Surgery and researchers from the Clinical Institute of Pathology, both at the Vienna General Hospital (AKH). The following day the patients undergo surgery where skin tissue is removed. The use of this tissue for medical research requires their consent. After observing the situation of informing the patient and of his/her decision-making we conduct interviews with patients, which aim at reflecting their experiences. Furthermore, we will also discuss the issue with medical professionals and with other actors more or less involved in the informed consent process. In order to enrich our material and to get feedback we organise a series of reflection workshops with experts from different disciplines (law, ethics, medicine, social sciences), with medical professionals and with patients and their representatives. The documentation of our team meetings as well as the project weblog will be the basis for analysing the transdiciplinary perspectives of our cooperation.