Appraisal of the Jordanian Law for Data Sharing in Stem Cell Research: in the Light of the 'GA4GH Framework' for Innovative Cancer Care

The need for data sharing in stem cell research will continue to grow as the field keeps advancing. Yet, without a comprehensive and harmonized governance system to ensure ethical and responsible data and sample sharing, the field is threatened by unethical practices, compromise of participants’ privacy and loss of public trust. In 2014, the Global Alliance for Genomics and Health (GA4GH) developed a common Framework for Responsible Sharing of Genomic and Health-Related Data. At the same year, Jordan passed the first of its kind law in the region for stem cells, Statute number 10 on Stem Cells. Using specific policy principles of the GA4GH Framework and the work of the International Stem Cell Forum (ISCF) Ethics Working Party, we identified several gaps in the Jordanian Statute of Stem Cell including active participation of the public, transparency in the data sharing and access processes, ensuring the quality and safety of the data, maintaining the privacy, security & confidentiality of individuals, their samples and associated data, preforming in-depth risk-benefit analysis and maintaining sustainability of stem cell banks and registries. We recommend revisiting the current Statue in light of the GA4GH Framework, which can be integrated to foster national and international collaboration and support responsible innovation in the discovery of new therapies for cancer treatment.