Talk / Overview
The COVID-19 pandemic has brought to the fore the crucial role that data collection, analysis, sharing, and dissemination play for governments, academic institutions, and private sector businesses racing to advance scientific research to help combat the virus. It also illustrates that data protection safeguards are essential to build public trust for the swift adoption of data-based solutions, such as the myriad efforts related to pandemic related research. Even before Covid-19 countries around the world have started charting new paths to seek the insights that health data can reveal while at the same time respecting individual rights. My presentation will present the regulatory fundamentals in medical research and data protection, and the components of new emerging national frameworks enabling access to health data for research in the public interest supported by privacy safeguards. I will highlight the similarities and tensions that are still present in this context around public-private collaborations, ethical review board oversight, de-identification, cross border data flows and defining what is 'public interest'.