My research focuses mainly on philosophy of medicine, specifically on empirical ethics applied to medical research and informed consent. I consider the epistemic characteristics of patients, clinicians, biologists and other stakeholders around medical research such as cultural backgrounds or the ethos of specific scientific communities. Through anthropological methods like interviews, field notes, observations or focus groups it is possible to describe phenomena created by the use of innovative technologies and practices as personalized medicine, biobanking and data driven research. These phenomena range from gaps between individual and societal points of view, public misunderstanding of science, increasing expectations of patients and broader tasks of medicine and medical research.
At present I am running an analysis of patients’ opinions about medical research (semi-structured questionnaires and interviews). Socio-demographic factors related to decision making are described – factors as age, stage of the disease, gender, familiar status, spoken language and cultural values. Also the given and retrieved information contribute to patients' experience – e.g informed consent sheets, encounters with clinicians and family members, consultation of websites, etc.
In my research autonomy of patients is a central theme to develop a patient centered approach to medical research where research participants might decide over time specific options as sharing of their personal data or joining new research studies – an approach also know as Dynamic Consent. Moreover, to have a broader overview, I am organizing other interventions as focus groups, interviews and encounters with biologists, physicians and researchers. Voices of these stakeholders allow a description of cultural and sociological aspects related to medical research, for instance (lack of) practices of data sharing and collaboration, dissemination of positive and negative results, incentives and rewards towards Open Science and other factors determining these practices.