Project Title: User-centered, legal-ethical, and private consent models for health data sharing in the EU

Objectives: There have been many different approaches to addressing informed consent challenges for health data, such as the increasing the understanding of content, compliance with legal and ethical requirements, and digital consent management systems. While these can begin to address the issue of consent management for health data, there lacks a direct relevance to sensitivity and privacy concerns unique to health data, such as re-use for research, the interconnectedness of health data, and stringent privacy concerns. To address these issues, we are working on a qualitative and quantitative mixed methods grounded in health and genomic data to 1) Improve knowledge about elements that enhance trust and transparency in the genomic/health data consent process and 2) Propose consent models that address the real-life challenges in consent models in realistic use cases, such as genomic data sharing (which may implicate family members due to genetic similarity, but who are not usually informed or asked consent). Methods include a literature review to better understand the background and make analyses, expert opinions to assess user attitudes, creating and testing prototypes, and developing interoperable models of consent.