Neuro-SysMed: Philosophy of Neurodegeneration

Neuro-SysMed (external link) is the first research centre of excellence for clinical treatment (external link) in Norway. This is the Research Council of Norway's medicine parallel to the Norwegian Centres of Excellence (external link) scheme, which usually has a more basic research approach.

The Centre aims to use a systems medicine approach on accumulating data from clinical trials to identify accurate markers for early diagnosis and sub-classification of diseases, predict prognosis and treatment response.

Philosophy of Neurodegeneration

In the Philosophy of Neurodegeneration project, led by associate professor Jan Reinert Karlsen and postdoctoral fellow Caroline Engen at the Centre for the Study of the Sciences and the Humanities (SVT) at UiB, a central issue being studied is the concept of suffering. Developing new perspectives on suffering, the group will use this concept as a frame for developing novel interdisciplinary approaches to understanding the characteristics of suffering in patients with severe chronic neurological diseases and how these can be alleviated.

The project focuses on the four diseases studied at Neuro-SysMed: Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), and multiple sclerosis (MS). To enable more precise articulations of the philosophical problems to be studied, the aim is to establish and develop collaborations across the various groups and activities at the centre.

Issues being studied

The philosophical and methodological issues being studied are:

• Issues related to the nature of severe chronic neurological diseases with a special focus on the problems of heterogeneity and complexity in disease stratification and classification.
• Issues related to the limits and goals of the systems / precision medicine paradigm in severe chronic neurological diseases with a special focus on the intersection between data and algorithmic driven science, clinical research, and clinical practice.
• Issues related to conceptualization of suffering and the nature and characteristics of suffering in patients with severe chronic neurological diseases, including their co-sufferers, e.g. next of kin.
• Issues related to broader societal aspects, expectations, and concerns with regard to precision medicine in severe chronic neurological diseases, including the models for studying these broader aspects (e.g., ethical legal and social aspects (ELSA), responsible research and innovation (RRI), technology assessment (TA), and ethics of science and technology).

The project is part of the Responsible Research and Innovation & Patient and Public Involvement (RRI/PPI) (external link)Node of the Centre,  where Karlsen og Engen are also responsible for the teaching subject "The nature of disease and suffering and the goals of precision medicine" (NEUROSYSM940), an RRI initiative called NeuroDialogues, and a Standard of Procedure (SOP) for RRI/PPI in clinical trials. 

Activities

The group organizes interdisciplinary discussion and reflection fora at Neuro-SysMed that seeks integration across the different groups. Here, topical philosophical, societal, and ethical issues in relation to the centre’s activities will be discussed. The group will contribute to public understanding and debate about these issues. The concept of suffering will serve as a key analytic frame and heuristic entry point of this research project.

During 2020, the group established contact with a recognized international publishing house for writing a book based on this research project, and in 2024 , Engen og Karlsen have been working on this 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.

In 2021 and 2022, Engen was a board member of Filosofisk poliklinikk (external link), a forum that organizes open meetings on medical-philosophical questions, and in 2023 she became Chair of their Board.   (external link)

Engen also wrote three chapters of the book Precision Oncology and Cancer Biomarkers (2022), edited by Anne Bremer and Roger Strand:

• Introduction to the Imaginary of Precision Oncology (external link)
• The Dynamics of the Labelling Game: An Essay On FLT3 Mutated Acute Myeloid Leukaemia (external link)
• Filled with Desire, Perceive Molecules (external link) (co-written with Roger Strand)

For an overview of more related activities, read more on the node's info page. (external link)