05/05/2022 HXWG Meeting

• Welcome & antitrust notice

• Agenda review

• Antitrust Policy Notice: Attendees are reminded to adhere to the meeting agenda and not participate in activities prohibited under antitrust and competition laws. Only members of ToIP who have signed the necessary agreements are permitted to participate in this activity beyond an observer role.

 “How Might we Design Consent Experiences for Data Sharing?” 

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.

Speakers

Arianna Rossi is an associate researcher at the Interdisciplinary Center for Security, Reliability and Trust (SnT) of the University of Luxembourg. She carries out research at the intersection between design, computer science, law, and linguistics concerning online manipulation, usable privacy and legal design.  Arianna has a mixed background, with a joint international Doctoral Degree in Law, Science and Technology (University of Bologna) and a Ph.D. degree in Computer Science (University of Luxembourg). She holds a M.Sc. in Linguistics with a focus on Natural Language Processing.  She has been an invited speaker at international conferences in EU and US and she routinely gives seminars about law, design and technology to academic students and practitioners.
She also organizes events to promote an open culture for law and technology with the Luxembourg chapter of the global grassroots movement Legal Hackers.

Xengie Doan received 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.

• Jim St.Clair to share use case / case study
• Phil Wolff to outline potential blog post
• Nicky Hickman to add HX Terms Wiki
• Kalin Nicolov to map stakeholders and steps in decision making to achieve goals using Alice Faber ACME use case, then we can map decisions against it. 
• Kalin Nicolov to see if Dan Gisolfi will join us for first implementer interview.  Also potential reach out to Darrell O'Donnell Riley Hughes and Karl Kneis