Treating rare diseases with the movies: What can cinema do to enhance public understanding of rare genetic diseases?

Jan Domaradzki (Poznan University of Medical Sciences, Poland)

Panel: Production of knowledge and knowledge practices in rare diseases

Abstract: Rare genetic disease (RDs) constitute an important medical and social challenge. For that reason they should be prioritized by both policymakers, healthcare providers and medical education campaigns. However, although in recent years a lot has been done to enhance RD policies, orphan drug reimbursement systems and government actions, there are still many gaps in the public awareness on RDs. Consequently, calls for initiatives to improve both healthcare professionals’ knowledge and the public’s awareness of RDs have emerged. Simultaneously, while many focus on the improvement of undergraduate and postgraduate education it has been suggested that also popular culture, and movies in particular, may serve as an educational tool in this field. The reason for this being that, while only a small portion of general public have ever met patient suffering from RD, the majority derive their impressions on RDs from other sources, primarily the entertainment media and popular culture. And because during the last decades, parallel to the dynamic progress in genetic knowledge and the development of novel orphan drugs, many movies on RDs have been released, the cinema may familiarize the public with diseases that are typically foreign to the everyday medical practice and facilitate the transfer of knowledge and attitudes on RDs to both medical students, healthcare professionals and the public. Thus, the paper will aim to analyse how rare genetic diseases are depicted in popular movies.