Clinical ethics

Clinical Ethics at the IMDE investigates the ethical dimensions of medical decision-making processes in modern cancer care and related clinical contexts. Our research focuses on questions relating to the complexity of treatment decisions in advanced disease, physician-assisted suicide and the ethical challenges in the care of elderly and vulnerable patients. This includes analysing the moral burden experienced by caregivers in difficult end-of-life situations and developing guidelines and preference-based tools to support shared decision-making. In addition, we analyse the perspectives of different stakeholders in data-driven medical environments and explore how economic factors shape clinical decision-making situations. In our work, we attach particular importance to taking into account the perspectives of all those involved - patients, relatives, the medical team as well as specialists and ethics experts.

Research ethics

The Research Ethics Division at IMDE addresses the challenge of reconciling scientific progress in biomedical research with the protection of individuals and society. Its focus is on providing ethical guidance for innovative research fields such as data-driven medicine, precision medicine, and genomic technologies. Here, we explore, among other things, innovative models of data use and governance, such as data trusteeships. We also explore ethical issues in translational medicine—that is, the transition from biomedical research to clinical application. Particularly in the context of genomic technologies, we examine normative questions surrounding whole-genome sequencing, the handling of incidental genomic findings, and the use of artificial intelligence in genomics.  Furthermore, we address the ethical, legal, and social implications of new biotechnological procedures such as genome and epigenome editing. The goal of our work is to develop a robust ethical framework for the translation of new technologies. This includes practice-oriented guidelines for researchers on addressing ethical challenges in research practice, templates for informed consent forms, and concepts for governance structures ensuring transparent and fair data access. In this way, we help to strengthen patient trust and enable responsible and socially accepted biomedical research.

Public health ethics

Public health ethics deals with the normative aspects and challenges of public health measures. Public health measures are implemented, for example, by government agencies and serve to protect or promote the health of a broad group of people (the entire population or specific population groups). These include laws (such as tobacco taxes), government promotion of healthy eating, vaccination campaigns, or screening programs. Public health ethics addresses very fundamental questions such as equality/inequality in the distribution of health or justice in pandemics. Public health ethics also addresses the evaluation and specific design of certain measures: For example, should we screen the genetic material of all babies to detect and treat hereditary diseases early or to prevent them? How should such genomic screening of all newborns (which is not currently offered) be designed? At the IMDE, we place a special emphasis on ethical aspects and issues concerning children in public health, e.g., the treatment of children and adolescents in German COVID-19 policy, or genomic newborn screening. We also consider which ethical theories and principles apply to public health ethics. Furthermore, we examine practical ethical challenges arising in research, such as data ethics issues in specific research projects involving the generation, collection, and use of epidemiological and other data.

Data ethics

The Data Ethics department at the IMDE focuses on the question of how medical data can be used responsibly to enable scientific progress and better patient care without jeopardising the rights and interests of patients. We deal with ethical issues of informed consent, data protection and fair access and utilisation rules for research data. We also focus on the development of transparent governance structures for big data infrastructures and international data cooperation. We also analyse ethical challenges of data-driven medicine regarding responsibilities of different actors and questions of trust and transparency in the data ecosystem. Our research combines normative analyses with empirical studies in order to develop viable and socially acceptable solutions for handling medical data.

Ethics of participation

The Ethics of Participation division at IMDE is dedicated to conducting accompanying research on participatory approaches in medical research. Its focus is on analyzing the impact of these approaches, their ethical implications, and the methodological prerequisites for successful participation. The goal is to systematically investigate the conditions under which citizens, patients, and other societal actors can be meaningfully and responsibly involved in medical research processes. On this basis, the IMDE contributes to the development and evaluation of participation formats and develops concepts for systematically assessing and further developing the quality and reach of participatory structures. A particular focus is on accompanying research on patient participation at the National Center for Tumor Diseases. Here, the IMDE empirically examines existing forms of “Patient and Public Involvement and Engagement” (PPIE), analyzes the experiences of various stakeholders, and develops tools to assess the quality and impact of participatory approaches. The insights gained are incorporated into the further development of participatory structures and contribute to the sustainable integration of patient perspectives into oncological research.