Motivation:

With the increasing digitalization of clinical and genomic information, data sharing is becoming the keystone for realizing the promise of personalized medicine to its full potential. Several initiatives, such as the Patient-Centered Clinical Research Network (PCORNet) in USA, eTRIKS/TranSMART in EU, the Swiss Personalized Health Network (SPHN) in Switzerland, and the Global Alliance for Genomics and Health (GA4GH), are laying down the foundations for new biomedical research infrastructures aimed at interconnecting (so far) siloed repositories of clinical and genomic data. In this global ecosystem, the ability to provide strong privacy and security guarantees in order to comply with strict regulations (e.g., HIPAA in USA or the new GDPR in EU) is crucial, yet extremely challenging to achieve, for biomedical research to be able to scale up. This prompts the need for research and innovation in all aspects of medical data privacy and security, spanning from the design of new privacy-preserving solutions and their integration to existing operational tools to the ethical and legal issues in medical data sharing.

The goal of this workshop is to discuss the latest advances in the field and identify the key elements from the technical, ethical and legal perspectives that will ensure a more privacy-conscious data sharing in the near future, thus paving the way to new and still unexplored use cases.

Related Regulations and Recommendations:

• WMA Declaration of Taipei on Ethical Considerations Regarding Health Databases and Biobanks
• Recommendation CM/Rec(2016)6 of the Committee of Ministers to Member States
  on Research on Biological Materials of Human Origin
• EU General Data Protection Regulation (GDPR)
• Swiss Federal Act on Data Protection