Caring for the orphans: Ethical issues in the context of rare diseases
June 15-16, 2023 @University of Zurich
Despite their name, rare diseases are not uncommon: An estimated 400 million people world- wide suffer from about 7,000 distinct rare conditions. Rare diseases are often debilitating and require expensive therapies, causing high financial and social burdens for patients, their fami- lies and the healthcare system.
Rare diseases have become an important target of healthcare activities which raises a range of ethical, social and political questions. For example, how should health care resources for rare diseases be allocated? Considering that rare diseases are often chronic and life-shortening, what does it mean for patients and their families to live with a rare condition? Since most rare diseases are genetic, should genome sequencing be applied to detect gene mutations that (might) lead to rare diseases? And how can research on rare diseases be conducted in an ethically responsible way, given the special vulnerability of patients, often children? The ITINERARE Ethics Conference brings together international scholars from medical ethics, philosophy, medicine and the social sciences to discuss these and further issues. It aims to promote ELSI research in the field of rare diseases, in order to advance discussions in society and to contribute to the development of healthcare policies.