Jan Reinert Karlsen is Associate Professor at the Centre for the Study of the Sciences and the Humanities (SVT), an inter-disciplinary and inter-faculty research unit at the University of Bergen. In his affiliation to NeuroSysMed, his project will contribute to a better understanding of philosophical issues in precision medicine in severe chronic neurological diseases. A central issue which will be 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 will focus 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.

The philosophical and methodological issues to be studied are:

1. 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.
2. 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.
3. 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.
4. 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 group plans to organize interdisciplinary discussion and reflection fora at Neuro-SysMed that will seek 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 activities of the group in 2020 have been restricted by the fact that the PI has been on two consecutive sabbaticals, the first was a research sabbatical committed to a project at SVT during the spring and the second was a parental leave during most of the fall. However, important progress was made at the conclusion of the year in relation to understanding foundational aspects of the concept of suffering, and a new research project was articulated, i.e. “The philosophy of severe chronic neurological diseases”. The PI will continue this work while awaiting the employment of a postdoc to this project. 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. The book proposal will be written in cooperation with the postdoc. Before the March 12th lockdown, Jan Reinert Karlsen contributed to a popular science debate about philosophical aspects of the science of aging organized by The Students’ Society of Bergen. After the lockdown, the Interdisciplinary Seminar about Suffering was reorganized as a ‘peripathetic seminar’ (i.e. walk–think–talk’ seminars) on a weekly basis. These ambulating seminars continued throughout 2020.

Selected Key Publications

1. Karlsen, JR; Solbakk, JH. A waste of time: the problem of common morality in Principles of Biomedical Ethics. Journal of Medical Ethics 2011;37 p. 588-591
2. Karlsen, JR; Solbakk, JH; Holm, S. Ethical Endgames: Broad Consent for Narrow Interests; Open Consent for Closed Minds. Cambridge Quarterly of Healthcare Ethics 2011;20(4) p. 572-583
3. Karlsen, JR; Strand, R. Annexation of Life: The Biopolitics of Industrial Biology. In: Solbakk, JH; Holm, S; Hofmann, B. (eds.) The Ethics of Research Biobanking. Springer 2009 ISBN 978-0-387- 93871-4. p. 315329
4. Karlsen, JR; Solbakk, JH; Strand, R. In the Ruins of Babel: Should Biobank Regulations be Harmonized? In: Solbakk, JH; Holm, S; Hofmann, B. (eds.) The Ethics of Research Biobanking. Springer 2009 ISBN 9780-387- 93871-4. p. 337-349
5. Karlsen, JR; Strand, R. The Ethical Topography of Research Biobanking. In: Ethics, Law and Society Volume IV. Ashgate 2009 ISBN 978-0-7546-7646-1. p. 127-148
6. Karlsen, JR; De Faria, PL; Solbakk, JH. To know the value of everything: a critical commentary to B. Björkman and S.O. Hansson’s ‘Bodily rights and property rights’. Journal of Medical Ethics 2006;(32) p. 21521