Regulating Health Research and Respecting Data Protection: A Global Dialogue

The global COVID-19 pandemic has focused minds sharply on the valuable role to be played by data collection and analysis for advancing health research, especially how it may help in informing and developing policy responses. Modern health research requires vast collections of data. Ensuring open access and wide sharing of these huge data sets that contain highly sensitive personal in-formation within the international scientific community is also essential to the development of medical treatments and research breakthroughs. The importance of all of these factors drastically increases in times of emergency when rapid responses are urgently needed from the scientific community (such as the development of a vaccine). However, as the European Commission and academic commentators point out, any such measures must also be lawful and proportionate, comply with data protection law, and respect the fundamental rights of those who have shared their health data.