Xengie is a nonbinary scientist with Master’s in Bioinformatics from the University of Oregon. After obtaining their Master’s, they worked as a bioinformatician at the Stowers Institute for Medical Research assembling genomes, analyzing repetitive DNA sequences in cancer genomes, and creating semi-automated analysis pipelines. They then worked as a bioinformatics engineer at Sage Bionetworks helping build infrastructure, community sourced metadata models, and user-friendly dashboards and tools as part of a data coordination center for the Human Tumor Atlas Network. Now, Xengie is a PhD student with Dr. Gabriele Lenzini in the IRiSC lab at the SnT, University of Luxembourg working on transparent, private, and user-centered consent eHealth data sharing in the EU with LeADS.
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.
- Xengie Doan, Annika Selzer, Arianna Rossi, Wilhelmina Maria Botes, & Gabriele Lenzini (2022), “Conciseness, interest, and unexpectedness: user attitudes towards infographic and comic consent mediums”, in 2nd International Workshop on Consent Management in Online Services, Networks and Things. DOI: 0.1145/3487553.3524632