Contextuality and Intersectionality of E-Consent: A Human-centric Reflection on Digital Consenting in the Emerging Genetic Data Markets

Soheil Human, Mandan Kazzazi

Publication: Contribution to conferenceConference paper

Abstract

Consent plays an essential role in different digital regulations, such as the European General Data Protection Regulation (GDPR). As a result, obtaining consent from data subjects (e.g. end-users or end-customers) are widely practised by many data controllers (e.g. service providers, companies, or organizations). Considering the importance and the widespread practice of consent-obtaining in different domains, critical and interdisciplinary studies of the current consent-obtaining mechanisms are highly needed. In this paper, we first shortly discuss an interdisciplinary human-centric perspective to consenting and propose that, among others, the contextuality of consent, as well as the potential intersectionality of consent, should be carefully considered in the development of consent-obtaining mechanisms. Then we elaborate on the distinction between “consent to personal data processing for commercial purposes” and “consent to personal data donations intended for research” in the field of direct-to-consumer genetic testing (DTC-GT). We show that based on our human-centric perspective, the contextuality and intersectionality of consent are sometimes overlooked in the current DTC-GT services, which are of considerable significance in the emerging genetic data markets. We hope that this paper can contribute towards the development of human-centric, accountable, lawful, and ethical (HALE) sociotechnical information systems dealing with consent and privacy management as fundamental building blocks of a sustainable digital economy.
Original languageEnglish
Publication statusPublished - 7 Sep 2021

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