Guidance for Informed Consent in the Context of Artificial Intelligence and Data Visitation

The development and use of artificial intelligence (AI) require access to large amounts of different types of data (data visitation) for training, validation, and refinement of models. This includes data visitation that can be regulated under data protection law, the so-called personal data, which is directly or indirectly identifiable personal information that is subject to confidentiality and to the rights of the individuals concerned (data subject’s rights). In particular, data subjects should be able to express their will regarding their contribution to research by being involved in the process of granting access to data for the development of AI systems. These recommendations guide how such involvement can be envisaged in different technological environments and for different scientific purposes. The guidance considers the conditions necessary to allow for autonomous choices by data subjects through the practice of informed consent, as well as alternative methods that allow for similarly effective individual involvement and expression of will regarding AI data access for research. Recommendations for action to facilitate the design and establishment of such processes are provided for different stakeholders in data governance, namely international organisations, governments, academia, industry, and civil society.