The political economy and ethics of rare diseases research in Austria and beyond

The question of how genomic information should be communicated to patients has been a hotly debated topic for a number of years. Our sub-project explores the experiences and views of rare disease patients and their families in connection with how genetic and genomic information has been, and should be, communicated.

We will employ a participatory approach: The research design will be co-created in collaboration with patients and patient organisations.

Because we are currently facing a major public health crisis, and because there is very little data on how rare disease patients and their families experience the COVID-19 pandemic and how their needs are met, we will also explore these questions within our sub-project.

Project team:

Professor Christiane Druml holds the UNESCO Chair on Bioethics at the Medical University of Vienna and serves as Director of Ethics, Collections and History of Medicine at the Josephinum. In 2007 she was appointed President of the Austrian Bioethics Commission by the Austrian Federal Chancellor. She is serving in many international functions and was member of the International Bioethics Committee IBC of UNESCO (2008 -2015).  In the context of the Ludwig Boltzmann Institute for Rare and Undiagnosed Diseases (LBI-RUD), together with Paul Just, she published a comprehensive guideline regarding rare and undiagnosed diseases directed at persons concerned like patients, scientists, physicians and the interested public Seltene Erkrankungen – Aspekte aus Ethik und Praxis (Rare Diseases – Ethical and Practical Aspects; in German), Facultas, 2020.

Professor Barbara Prainsack is Head of Department of the Department of Political Science, University of Vienna, where she also directs the interdisciplinary research platform “Governance of Digital Practices”. Her work explores the social, ethical, and regulatory dimensions of genetic and data-driven practices and technologies in biomedicine and forensics. Barbara is a member of several national and European advisory bodies such as the National Bioethics Commission in Austria, and the European Group on Ethics of Science and New Technologies advising the European Commission. Her latest book is: Personalized Medicine: Empowered Patients in the 21st Century? (New York University Press, 2017).

Doctoral student Antonia Modelhart earned her Master’s degree in Social and Cultural Anthropology at the University of Vienna. Having specialised in medical anthropology and STS, in her Master’s thesis she focused on reproductive technologies. She then moved to Hamburg where she carried out research on antibiotic resistance in Germany and Ghana at the HafenCity University.