Collective consent, risks and benefits of DNA data sharing

Authors: Xengie Doan

ABSTRACT

Health data is sensitive and sharing it could have many risks for per- sonal or shared genetic data. So how can impacted individuals consent together? Collective consent has been used in person, but no digital collective consent exists yet. Challenges span legal-ethical issues and technical properties such as transparency and usability. To address these challenges, this work uses genetic data sharing as a use case to better understand what tools and methods can enhance a user-friendly, transparent, and legal-ethically aware collective consent.

Keywords: Consent – Genetic Data – eHealth – GDPR– Business Process Improvement

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