EDADO: A European Ethical Code for Data Donation
The sharing of data for medical research, policy-making, and humanitarian purposes is increasingly recognised as a crucial means to improve private and public life in mature information societies. At the same time, competing tensions on data control and ownership, respect of individual rights and consent, limited technical understanding, and the lack of adequate frameworks for coordination and ethical governance pose serious challenges to the donation of data, which remains virtually impossible today. They risk undermining its huge potential. A European ethical code for data donation will offer the necessary guidance to meet these challenges, as it will shape data donation practices to ensure respect of users’ individual rights and consent, foster transparency and trust, as well as harness the value of data to spur scientific research, public debate, private and public wellbeing.