Consent Champions

Project Description

Consent Champions

Online consent is severely broken. Philosopher Helen Nissenbaum argues that the model of notice-and-consent is inherently flawed as we can never fully understand the repercussions of data about us being used in different contexts:

“Proposals to improve and fortify notice-and-consent, such as clearer privacy policies and fairer information practices, will not overcome a fundamental flaw in the model, namely, its assumption that individuals can understand all facts relevant to true choice at the moment of pair-wise contracting between individuals and data gatherers.”

Enter consent champions: organisations to make consent decisions on your behalf. These could be any organisation you trust to make decisions for you on specific types of data about you. For instance, someone infected with HIV might have specific privacy preferences, ranging from a desire to keep this information private, to wishes to help research towards better treatments. HIV advocacy bodies would potentially be well-suited to understand the context necessary to navigate these concerns, which are both complex and interlinked. In a similar vein, trade unions could be well-positioned to create consent profiles that would specifically deal with data collection and sharing relating to future employment, or wage calculations.

Consent champions, therefore, are organisations that hold expertise in specific domains (e.g. health, mobility, human rights) and use that expertise to draft consent profiles regarding data collection and usage that individuals can adopt as their own. These profiles reflect the ethical considerations and risk assessments performed by the consent champions, as well as the values and norms the proxy stands for. The trust placed in consent champions is founded in their proven capacity for understanding the specific norms, values, needs and expectations of a specific demographic, given a specific context.

This research project further explores the concept of consent champions and hopes to understand how consent champions could help us navigate privacy decisions and the externalities of data sharing. In addition, we will explore how to navigate consent in groups. For instance, what if one person sharing their DNA data in an effort to cure cancer conflicts with their family's interest to keep their DNA hidden? How do we negotiate between these different interests?