by IEAG MEMBERS CARMEN BARROSO & KATELL LE GOULVEN
As data become more central to sustainable development, the immense scope for data to empower people is becoming apparent. But alongside this opportunity are clear risks, as people around the world question the accessibility and privacy implications of the new world of data. At the heart of issues like these—both the potential and the risks— are rights. Some members of the panel have been asking: what would a rights-based approach to the data revolution entail?
We know we are not alone in asking these questions. The panel’s initial consultations revealed a shared concern for data-related rights. Indeed, around the world, issues of rights and data are being hotly debated by citizens, legislative bodies, civil society, and the private sector. As we attempt to map the landscape of rights and data, we therefore seek your help!
If you have thoughts, expertise, or concrete examples on the following set of questions, please share with the panel by commenting below or by emailing them to email@example.com with the subject line “rights-based data revolution.”
How do rights intersect with the process of collecting, analyzing and disseminating data?
Initial consultations have resulted in the following set of rights related to data. What is missing? Which rights should be prioritized in the context of the Panel’s report?
- Right to an identity (right to be counted)
- Right to privacy (in Europe: right to be forgotten)
- Right to participation
- Freedom of expression/ speech
- Ownership: right to own your personal data
- Right to access data about you (re-use, sale of data)
- Principles of consent
- Right to due process (how data is used, ie. how to regulate the algorithm)
- Protection from discriminatory uses of data
- Right to non-discrimination and equality (how data hides or shows inequalities among subgroups of the population)
What existing rights regulation, policies, or frameworks could be applied to data for development?
This might include frameworks from other sectors, ie. the right to be counted in the Convention on the Rights of the Child; or from other fields, ie. frameworks for ethical use of DNA data. What gaps should be highlighted in the report, ie. areas where “new data” require altogether new norms, frameworks, and policies for a rights-based approach to the data revolution?
How can data empower people?
Many advocate for an SDG monitoring framework that is participatory and empowering to citizens. Can data provide voice? What IEAG recommendations would ensure that data support the right to participation, both in terms of data collection and data access?
Statistical averages can hide inequalities but granular data can infringe on privacy.
As decision-makers use data to target policies and programs, data needs to be disaggregated in different ways—for example by gender, geography, age and income level— to ensure we understand the circumstances of different segments of the population. The more granular the data, the more powerful the potential to address the needs of all. But there is a concern that such disaggregation might infringe on people’s right to privacy. What recommendation should the IEAG make to reconcile this dilemma?
What are we missing?
Please tell us any other thoughts you have on a rights-based framework for the data revolution.