EU Should Not Prohibit Private Companies from Participating in Voluntary Data-Sharing Initiatives for the Benefit of Society
The European Union is seeking a solution to regulate the secondary use of private-sector data for social good purposes, and the Data Governance Act (DGA) is set to play a crucial role in this endeavour. The DGA, which the European Parliament is expected to vote on next week, introduces a novel concept called "data altruism."
Data altruism involves voluntary data sharing for social good and includes two types: individuals sharing personally identifiable information (PII) for research, and nonprofit organizations sharing non-PII about their users. The DGA aims to foster a culture of corporate social responsibility by offering practical infrastructures and incentives for companies to engage in data sharing, while safeguarding data privacy and compliance with regulations such as the General Data Protection Regulation (GDPR).
One example of data altruism is the Personal Genome Project, where participants share their genome sequence and health data for scientific research. Another example is Entur, a government-owned transportation company in Norway that collects and shares anonymized data about trips on Norwegian public transportation for secondary purposes.
Finland has already set a precedent for data altruism with the establishment of the Finnish Health and Social Data Permit Authority (Findata) in 2019. Findata serves as a single authority that oversees the entire data-sharing process for secondary use of private-sector data, ensuring regulatory clarity and trust.
Much of the most granular, representative, and useful data needed to address social challenges often rests in the hands of for-profit companies. By providing regulatory clarity, the DGA could help encourage more for-profit companies to share their data for social good purposes. This could help the EU address challenges such as disease spread, urban development, displacement, climate change, and disaster response.
The DGA creates the category of organizations recognized for managing data voluntarily shared for the public good—companies can register to share data through these intermediaries, gaining trust and regulatory clarity. The DGA also provides a clear set of harmonized rules and conditions under which companies can share data, reducing legal uncertainties and ensuring adherence to data protection standards.
The DGA's non-coercive, incentive-based approach focuses on voluntary sharing by emphasizing benefits for social innovation, research, and environmental goals. This can foster a culture of corporate social responsibility and enhance company reputations. The DGA aligns with the GDPR, the Data Act, and AI regulations to ensure companies can share data safely, such as personal or sensitive data, with conditions safeguarding privacy and ethical use.
While the DGA sets the structural basis, coordinating enforcement and addressing overlaps with regulations like the Data Act (which focuses on mandatory access in certain contexts) is important. Member States designate authorities to oversee these frameworks, which reinforces consistency and confidence for companies considering voluntary data sharing.
In an AI-driven economy, many firms compete not by having exclusive access to data, but rather by what they do with that data. The DGA, by promoting data altruism, aims to strengthen data sharing mechanisms within the EU, benefitting both society and the private sector.
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