Ethics and Epistemology of Precision Medicine

Precision medicine is the current promise of the future of biomedical research: The vision is to mobilize all available medical knowledge and to combine it with ever finer diagnostic possibilities in order to develop individualized therapies, tailored to the needs of individual patients. In the future medicine shall no longer treat diseases according to standardized treatment regimes but precisely monitored forms of sickness.

With this goal in mind, the Cluster of Excellence Precision Medicine in Chronic Inflammation (PMI) Vis researching and developing methods for the prevention, diagnosis and therapy of chronic inflammatory diseases with a focus on diseases of the barrier organs. This includes bowel diseases such as ulcerative colitis and morbus chrome, lung diseases such as asthma, and skin diseases such as psoriasis.

The Cluster’s innovative research and translational efforts (from bench to bedside) do not only challenge current practice in medicine, they also raise philosophical, ethical and social political questions that are being investigated as a special research field. Two teams are dedicated to the ethical and epistemological aspects of precision medicine in chronic inflammation and form part of the Cluster Research- and Technology Field IX (Ethics, Epistemology and Economics).

Ethical aspects
(Bozzaro/Erdmann/Rehmann-Sutter)

Precision medicine research and its clinical application promise an optimized therapy and thus an improved quality of life for patients with chronic inflammatory diseases. However, the extensive collection and massive use of patients' genomic and medical data as well as information on their lifestyle and possible environmental factors that this requires also raises questions about the proportionality of data collection as well as opportunities and risks. This research project therefore investigates the extent to which the possibilities and limitations of precision medicine are perceived by experts and patients, and the significance of precision medicine for the experience and conception of a "good life" from the perspective of those affected.

An important goal of this study is the development of patient-oriented evaluation criteria for precision medicine - especially with regard to what makes life with the disease better from the perspective of patients. The subproject will use a qualitative study and philosophical analysis to contribute to the ethics of precision medicine practice, specifically analyzing issues of communication and clinical decision-making.
 

Epistemological aspects
(Borck/Meunier/Schües)

In precision medicine, vast amounts of data have to be collected, curated, and integrated, often across heterogeneous research cultures and classification systems. The epistemology subproject addresses these issues from philosophy of science in practice: How is the complexity of biomedical data on chronic inflammatory diseases dealt with in the context of precision medicine research and practice? What epistemology and methodological challenges exist in integrating knowledge from different research cultures? What communicative and normative problems arise in the translation process to the clinic? How do the different actors deal with the divergent goals in research and clinical practice? How does the aim of precision interfere with scientific uncertainty?

An important goal of this subproject is the development of resilient translation procedures between different research branches in precision medicine and of guidelines for meeting the communicative challenges in the translation into clinical practice. In the sense of a philosophy of scientific practice, empirical observations will be combined with philosophical analyses of science and reflexive interventions in the ongoing translation steps within and between the different working groups of the Cluster of Excellence.
 

Funding
German Research Foundation, within the Cluster of Excellence „Precision Medicine in Chronic Inflammation“ 2020-2025.

Team

Prof. Dr. Cornelius Borck, Institute of History of Medicine and Science Studies, University of Lübeck

Prof. Dr. Claudia Bozzaro, Institute for Experimental Medicine, Medical Ethics Group, Christian-Albrechts-Universität zu Kiel

Dr. Anke Erdmann, Institute for Experimental Medicine, Medical Ethics Working Group, Christian-Albrechts-Universität zu Kiel

Dr. Simon Lohse, Institute for History of Medicine and Science Studies, University of Lübeck (2021-2022)

Dr. Robert Meunier, Institute for History of Medicine and Science Studies, University of Lübeck (2022-2023)

Prof. Dr. Christoph Rehmann-Sutter, Institute for History of Medicine and Science Studies, University of Lübeck

Prof. Dr. Christina Schües, Institute for History of Medicine and Science Studies, University of Lübeck
 

Further Information

Link to the predecessor project The Living Genome and Chronic Inflammatory Diseases