HiGHmed undertakes interdisciplinary research on ethical, policy and social issues with regard to the collection, linking, and use of patient data in medical research and health care. It brings together leading experts from social, political and cultural sciences, philosophy and meta-research. The interdisciplinary research group has diverse experience in empirical stakeholder research, research ethics, practice-oriented ethics and governance research.
Data-based knowledge-building and decision-making, including the translation of research findings into clinical and public health applications, imply significant opportunities and challenges for individual patients, public health, medical professionalism and healthcare financing. A central aim of the Work Package “Ethics & Stakeholder” is the evidence-based development of practice-oriented frameworks and recommendations for governance solutions in the field of big data technologies with immediate relevance for the consortium as well as for ongoing national and international debates.
This includes the following issues:
- Consent and disclosure: Procedures and documents for obtaining broad consent will be evaluated and further developed to be more effective and efficient.
- International data sharing and data access: Based on policy analyses, systematic reviews, and stakeholder research, HiGHmed will develop policy frameworks and recommendations for dealing with the current challenges and opportunities regarding access and sharing of data.
- Clinical & public health decision making: A conceptual and normative analysis of the conflicts arising between personalised, big data-driven medical decision-making and the principles of evidence-based medicine will be complemented with an empirical-ethical assessment of stakeholders’ perceptions, e.g. regarding patient participation and incidental findings. These analyses will result in consensus-based recommendations for the practical handling of big data-based decision making in the clinical and public health context.
HiGHmed Ethics Experts: Eva Winkler, Holger Langhof, Katharina Beier, Christoph Schickhardt, Mark Schweda and Tobin Schumacher representing the “Ethics and Stakeholder” Work Package at the annual conference of the German Academy for Ethics in Medicine (AEM), Cologne, September 14th 2018