Interdisciplinary Conference about Ethics and Data Protection in Precision Medicine
Date and Place
Wednesday, 24 November 2021, 9-15h (lunch break from 12-13h). On site at the Auditorium Langhans, Institute for Pathology, Murtenstrasse 31, 3008 Bern. Online via Zoom.
Traditions, processes and concepts in the domain of medical research legislation and ethics grew out of classical methodologies such as clinical trials.
How can we adapt these to accommodate for precision medicine research?
The conference is focused on the situation in Switzerland, and centered on the new research methodologies used in Precision Medicine, such as:
- Collection, exchange and analysis of consented patient data (omics, clinical) coming from more than one hospital.
- Data research and machine learning within bigger pools of consented patient data (omics, clinical).
The conference lies at the heart of an interdisciplinary dialogue:
The conference aims at fostering organizational learning:
Conference contributions could be:
The following detail questions might be addressed during the conference:
- Cancer research often focusses on somatic mutations. Somatic mutations are genomic data, but they do not allow for the identification of the individual patients. Yet, frequently they are discussed in the same way as any other genomic data. Here, some distinctions might be applied.
- The treatment of genomic data might be compared with the treatment of other highly confidential data in Internet transactions. Here, some risk evaluation methodologies might be applied.
- As of 2021, research projects need to discuss bilateral data transfer agreements with the hospitals. These data transfer agreements are then evaluated again by bodies such as Swissethics and SPHN/BioMedIT. Would it be possible to establish one (or two, or three) framework data exchange contracts between the hospitals?
- Ethical applications in precision medicine projects take a lot of time. Could this be improved in one way or another? E.g., if new project B looks at the already consented data coming from project A, then it might be considered as part of project A?
Following the conference, a request for applications will be published – it might address issues such as the ones mentioned above.
The conference is organized by the Bern Center for Precision Medidicine (BCPM) under the auspices of the University of Bern and the Bern University Hospital, and in partnership with national programs such as the Swiss Personalized Health Network: