Call for participation in research: Exploring collective governance approaches to personal data exchange platforms

Image source: Markus Spiske, Unsplash

By Bastian Greshake Tzovaras, Danny Lämmerhirt, and Mad Price Ball

Personal data has become increasingly ubiquitous and diverse for a growing segment of society, and its aggregation has been central to a variety of applications. For instance, data is the substrate for artificial intelligence applications, from targeted advertising over facial recognition to enabling self-driving cars. Given the potential uses of data aggregates, ways for individuals to actively participate in their governance have become more and more sought-after.

Some advocacy groups have asked to expand user access to data that is derived from personal data. Group consent has found its way from benefit sharing regimes into debates about community control over data aggregates and automation techniques (e.g. here). Scholars have illustrated how people can create and interpret data aggregates on their own terms, for instance when assembling data on diseases and other shared conditions (e.g. here and here). These discussions show that not only free flows of data require our attention, but also how data is used and made sense of and by whom.

Participatory data infrastructures such as data platforms could facilitate the collective management, interpretation and use of data aggregates. But what platforms exist to implement such practices? Prominent examples are personal data exchange platforms. Sometimes called data commons, data cooperatives, or data marketplaces, these platforms often tout a “human-centric” and/or “collective” design. While they invoke different moral justifications (e.g. bringing individual, collective, or public value) they are usually based on individual data portability rights and individual consent. They tend to share a concern for legitimate or ethical data sourcing, as opposed to collective or public governance of permissible data uses (see here and here).

What does it mean to involve the public in data governance decisions? What practices do existing platform designers devise to enable collective governance over datasets? And what can researchers, platform designers, public policy makers, community organizations, data journalists, and others learn from those examples?

Our research project

To address these questions, we recently started a research project to study collective approaches to data governance. Our project asks how the governance of data use is organised in different ways, how participation in governance is organized beyond individual consent, and what this means for the distribution of value.

Our study begins by outlining the manners in which individual consent may be rendered more ethical, potential lessons from similar efforts in biomedical research, and its limitations. Building on this, we explore other already-deployed approaches for participation which go beyond individual consent within personal data exchange platforms (see earlier work here). These represent additional concrete ways in which platforms may claim a collective aspect to their design.

How you can participate

Are you a designer exploring collective governance mechanisms for data use? We would love to hear from you.

We are looking at various examples where collective participation is implemented. We consider collective mechanisms as broadly any practice that invites participation around data access and uses by social groups beyond the individual. Relevant collective mechanisms could include, but are not limited to:

If you want to share your work with us, feel free to send an email to Bastian Greshake Tzovaras (bastian.greshake-tzovaras@cri-paris.org), and Danny Lämmerhirt (danny.laemmerhirt@uni-siegen.de).

We will get in touch and arrange a brief interview, either in written form or a call.

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