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Xengie Doanreceived a Master’s in Bioinformatics from the University of Oregon and a Bachelor’s in Biology from Willamette University where their interest in collaborative research began. Prior to joining the Interdisciplinary Centre for Security, Reliability and Trust (SnT) at the University of Luxembourg, they worked as a bioinformatician at the Stowers Institute for Medical Research and at Sage Bionetworks in the US. Their PhD topic is part of Legality-Attentive Data Scientists (LeADS), an EU funded project, with the IRISC lab researching transparent, secure, and private user-centered eHealth data sharing for the EU.

Video  

Intro & Summary

The complex ecosystem where manifold transactions can be automatically enabled by smart contracts contributes, at least in principle, to establish greater transparency about data use towards the many parties involved. However, the mere fact of building such a verifiable and traceable architecture does not automatically translate into understandable communications, easily applicable instructions and smooth transactions for human beings. For instance, informed consent is hindered by the complex mix of legal, medical and technical information through which participants need to orient themselves when they make decisions about data sharing permissions. In data-driven environments, the way options are designed and presented can stimulate privacy-preserving practices or, on the contrary, unwanted data disclosure. This talk will address some challenges and discuss possible solutions currently experimented in consent design.

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