Article by Stefaan Verhulst and Peter Addo: “In theory, consent offers a mechanism to reduce power imbalances. In reality, existing consent mechanisms are limited and, in many respects, archaic, based on binary distinctions – typically presented in check-the-box forms that most websites use to ask you to register for marketing e-mails – that fail to appreciate the nuance and context-sensitive nature of data reuse. Consent today generally means individual consent, a notion that overlooks the broader needs of communities and groups.
While we understand the need to safeguard information about an individual such as, say, their health status, this information can help address or even prevent societal health crises. Individualised notions of consent fail to consider the potential public good of reusing individual data responsibly. This makes them particularly problematic in societies that have more collective orientations, where prioritising individual choices could disrupt the social fabric.
The notion of a social licence, which has its roots in the 1990s within the extractive industries, refers to the collective acceptance of an activity, such as data reuse, based on its perceived alignment with community values and interests. Social licences go beyond the priorities of individuals and help balance the risks of data misuse and missed use (for example, the risks of violating privacy vs. neglecting to use private data for public good). Social licences permit a broader notion of consent that is dynamic, multifaceted and context-sensitive.
Policymakers, citizens, health providers, think tanks, interest groups and private industry must accept the concept of a social licence before it can be established. The goal for all stakeholders is to establish widespread consensus on community norms and an acceptable balance of social risk and opportunity.
Community engagement can create a consensus-based foundation for preferences and expectations concerning data reuse. Engagement could take place via dedicated “data assemblies” or community deliberations about data reuse for particular purposes under particular conditions. The process would need to involve voices as representative as possible of the different parties involved, and include those that are traditionally marginalised or silenced…(More)”.