Abstract

In their Comment, 1 Topham JT Lawlor RT Lemaire D Casolino R Biankin AV Data sharing in cancer research: perceived risks and the consequences of not sharing. Lancet Oncol. 2024; 25: 275-276 Summary Full Text Full Text PDF PubMed Scopus (0) Google Scholar James T Topham and colleagues emphasise the vital role that data sharing has in studying rare diseases. They cite reluctance to share as a key factor constraining progress in cancer research, with a main frustration being the restrictive policies of the General Data Protection Regulation (GDPR). They highlight the work of the International Cancer Genome Consortium as a case study of how sharing genomic data poses challenges. Data sharing in cancer research: perceived risks and the consequences of not sharingOpen data sharing is a crucial component of effective cancer research. Increasing study sizes for rare diseases, approaching datasets from alternative perspectives, and capturing the uniqueness of geographical groups are all possible when data are openly shared. Patients often participate in research to help others similar to themselves, and have expectations on how their data will be shared among the research community. The ultimate contribution of their data relies on institutions that store and govern the data. Full-Text PDF