We recommend that you upgrade to the latest version of your browser.
Visual identificator for Neurosysmed and Centre for clinical treatment research
A man and woman standing in front of a large window

The RRI/PPI Node

The RRI/PPI Node is developing a model of human suffering. Suffering involves conceptions of human affliction that places disease within a larger frame of burdens and carrying capacities of patients and their caregivers. Such conceptions are crucial for the node’s ongoing work on the RRI and PPI of precision medicine (PM).

The Responsible Research and Innovation & Patient and Public Involvement (RRI/PPI) Node 

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/activities: 

  • A research project entitled “Philosophy of precision medicine in severe chronic neurological diseases (POS-PM).”
  • 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 the autumn of 2023, NeuroDialogues plans to continue its sessions in the spring and autumn of 2025, providing a platform for critical engagement with these issues emerging from Neuro-SysMed.
  • Standard of procedure (SOP) for RRI/PPI in clinical trials.

Engen and Karlsen is working on their co-authored monograph (working title: Precision and Suffering). The book will contain the development of a novel model of suffering to be applied in RRI engagements with precision medicine. The NeuroDialogues initiative was temporally discontinued due to low attendance rates, but its main idea, i.e. that of creating an interdisciplinary space in which scientific staff can engage with RRI/PPI issues in neurology, was continued in the form of a SOP (standard operating procedure). The idea is to create a procedure for addressing ethical, epistemological, and societal issues in project design and implementation. The SOP is under development and testing. 

Selected dissemination activities from 2024:

  • Engen, C. (2024) “Designerbabyer - Science fiction eller virkelighet?” Panel discussion at Bergen Offentlige Bibliotek, 12 March 2024.
  • Engen, C. (2024) “Restructuring Neurology: Responsible Research and Innovation (RRI)” Presentation at Neuro-Sys-Med seminar series, Armauer Hansen Hus, 13 March 2024.
  • Engen, C. (2024) “I møte med det uforutsigbare: Usikkerhet i medisin og helsefag.” Dialogue meeting at Filosofisk Poliklinikk, Alrek Helseklynge, 10 April 2024.
  • Engen, C. (2024) “Hva skal medisinen med refleksjon og klokskap, når vi har kunstig intelligens?” Full-day seminar at Filosofisk Poliklinikk, Alrek Helseklynge, 3 May 2024.
  • Engen, C. (2024) “Futures of Cancer Research and Cancer Care.” Panel discussion at Solstrand (CCBIO-VBP Research Meeting), 29 August 2024.
  • Engen, C. (2024) “Controversy in Prevention of Neurodegeneration.” Discussion with Charalampos Tzoulis, moderated by Ambra Stefani, at Solstrand (Neuro-SysMed), 30 September 2024.
  • Engen, C. (2024) “Kulturell iatrogenese” Dialogue meeting at Filosofisk Poliklinikk, 21 October 2024
  • Engen, C. (2024) “Håp og helse” Dialogue meeting at Filosofisk Poliklinikk, 11 December 2024
  • Karlsen, JR. (2024) «The nature and limits of autonomy” invited lecture at Etikksalongen, Haukeland University Hospital, 7 November
  • Karlsen, JR. (2024) “The easy death in complex societies” invited lecture and panel discussion at the seminar “End of life – is it our own choice?” at Haraldsplass Deaconess University College, 12 December
  • Karlsen, JR. (2024) “What is Edification?” keynote lecture at the conference “From selfie to interplay – edification in education” at The University of Agder, 4-5 December
Last updated 2/20/2025