Node leaders: Jan Reinert Karlsen and Caroline Engen
Jan Reinert Karlsen, is an associate professor at the Centre for the Studies of the Sciences and the Humanities at the University of Bergen. His research includes the RRI of post-genomic medical research and conceptions of suffering across different thought traditions. He has a long track record in interdisciplinary research and teaching.
Caroline Engen is a postdoc (50%) and specialist in training (psychiatry) (50%). She has previous experience from development of personalised molecular therapy for acute myeloid leukaemia and is currently focusing on RRI of precision medicine and philosophy of suffering.
Node activities
The RRI/PPI Node is responsible for four projects:
- A research project entitled “Philosophy of precision medicine in severe chronic neurological diseases (POS-PM).”
- An innovation project entitled “Communicating cognitive decline: Language games with tactile and visual objects (CCD).” The project was a proof of concept to test Amy van den Hooven’s visual and tactile tool kit, created during her Master’s in Design.
- A teaching subject called “The nature of disease and suffering and the goals of precision medicine (NEUROSYSM940)”, which is part of the Neuro-SysMed research school. Initially introduced in the spring of 2023, it is slated for its next iteration in the autumn of 2024.
- An RRI initiative called NeuroDialogues. The NeuroDialogues initiative is a biannual forum dedicated to fostering discussions on severe neurological conditions, the impact of technology, and the intricacies of the human mind. Launched in autumn 2023, NeuroDialogues plans to continue its sessions in the spring and autumn of 2024, providing a platform for critical engagement with these issues emerging from Neuro-SysMed.
During 2023, Engen and Karlsen have continued working on a co-authored monograph (working title: Precision and Suffering). The book will contain the development of a novel model of suffering and its application in RRI engagements with precision medicine. The innovation project (2) was concluded. Although we concluded negatively on the prospect of using van den Hooven’s design for the project’s intended aim, a number of positive findings and experiences nonetheless were made. These were documented in an extensive report submitted to UiB Ide, Neuro-SysMed, and the Humanistic Faculty. Work on a follow-up project was commenced in cooperation with the Dementia group and the Norwegian Health Association.
Selected dissemination activities from 2023:
- Engen C. (2023) «Å stille diagnose på medisinen – Jubileumsmarkering – 25 år med Filosofisk poliklinikk» (Panel discussion) 04.10.2023. Filosofisk poliklinikk, store auditorium, Haukeland universitetssykehus
- Engen C. (2023) «Evighetsmennesket" – hvilke etiske utfordringer må vi forberede oss på?» 24.05.2023. Digital helse-dager 2023, Hotel Edvard Grieg. https://vimeo.com/haukeland/review/829500989/0a42898503
- Karlsen JR., Haugarvoll K., Gissum K. (2023) «Å leve med demens». Presentation and interactive workshop with members of ‘Erfaringspanelet’. Nasjonalforeningen for folkehelsen in Oslo.
- Engen C. (2023) «Responsible clinical trials in the age of personalized medicine» (Panel discussion) 09.05.2023. 11th CCBIO Annual Symposium 2023, Solstrand Hotel. Panel: Linn Getz, NTNU; Caroline Engen, Neuro-SysMed/UiB; Line Bjørge and Karen Rosnes Gissum, CCBIO
- Engen C. (2023) «Presisjonsmedisin - muligheter og utfordringer for psykiatrien» 16.03.2023. Psykiatriveka 2023
- Engen C. (2023 ) «Lytring: Skal vi bare kvitte oss med kunnskap vi ikke liker?» (Panel discussion) 23.02.2023. Stormen bibliotek, Bodø. https://site.nord.no/lytring/debatt/kunnskap/
- Engen C. (2023) «Ansvarlig kreftforskning – hvordan få det til?» (Panel discussion) 14.02.2023. Litteraturhuset, Berner-kjelleren - Bioteknologirådet og PINpOINT (NFR Digitalt Liv Norge, Oslo universitetssykehus) https://www.youtube.com/watch?v=qz6LqWgSjyw