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ESOF – International sharing and protection of medical and associated data, le 13 juillet à Toulouse

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Dans le cadre de l’EuroScience Open Forum (ESOF), une session parallèle du programme scientifique intitulée “International sharing and protection of medical and associated data” est organisée à Toulouse.

Résumé : Sharing medical data within and beyond national borders creates concerns about data security and privacy. Legislators are revising personal data protection regulations in many parts of the world. The EU adopted the General Data Protection Regulation which will apply from May 2018 to all member states. In Asia, Japan has amended its legislation concerning personal data protection, which is enforceable in May 2017. South Korea is also revising its legislation on data protection. Additionally, existing legal frameworks for international data sharing have been recently revised such as the EU-US Privacy Shield. Professional organisations such as the Global Alliance for Genomics and Health or BBMRI-ERIC are developing frameworks for international data sharing. It seems that there will be patchwork of rules and guidance. While some wish for a one-size-fits-all approach, differences in national law and culture must be respected. This diversity of regulations and various approaches to what data needs to be protected and what can be shared can lead to varying interpretation. This can hinder the work of global initiatives combating diseases whose success depends on the rapid sharing of vast amounts of genomic, clinical, and other data, e.g. the International Cancer Genome Consortium. It is now necessary for relevant stakeholders to share information about the current landscape concerning data protection and seek practical policies. In this panel discussion, we will first hear short talks by the international experts and then identify the common challenges and necessary tasks to facilitate effective global collaboration in medical research.

Date : le 13 juillet 2018 de 15h15 à 16h30

Lieu : Centre de congrès Pierre Baudis – Amphithéâtre Gavarnie

Intervenants :

  • Donald CHALMERS – University of Tasmania
  • Yoon-jung CHANG – Hospice & Palliative care branch, National Cancer Center
  • Kazuto KATO – Graduate School of Medicine, Osaka University
  • Fruzsina MOLNÁR-GÁBOR – Heidelberg Academy of Sciences and Humanities
  • Emmanuelle RIAL-SEBBAG – Inserm UMR 1027, Université Toulouse III Paul Sabatier
  • Susan WALLACE – University of Leicester, United Kingdom

[Avec la participation d’Emmanuelle Rial-Sebbag, Responsable de la Plateforme Ethique et Biosciences (Genotoul Societal)]


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