SoBigData ++ and LeADS joint Awareness Panel
Dynamic Consent (DC) uses information technology to enable continuous communication and interactive consent. It allows research participants to change their choices and preferences on participation and receive updated information on the research that is being conducted with their data and samples.
In this awareness panel, we therefore reflect on Dynamic Consent:
- From an ethical and legal point of view, particularly on how DC may:
a. Enable an appropriate balance between the protection of participants’ fundamental rights, including their right to data protection under the GDPR, and the promotion of data sharing and research, with particular regards to the case of secondary uses. In this respect the definition of different data protection regimes will be advanced in accordance to the nature of research that are targeted with secondary uses and to the nature of the subjects involved.
- Empower the research participants with more control over their data within the new European Health Data Space.
- Be enhanced to address the inequalities entailed by the digital divide.
- From the research participant’s point of view, particularly on how DC may help build a transparent trust relationship between participants and researchers.
- From a technological point of view, particularly on how DC technically works and the related technical opportunities and challenges