Why de-identified data sharing for research should be in the public interest.

Area of Science:

• Bioethics
• Data Governance
• Public Health Research

Background:

• De-identified data sharing for research is common on national platforms.
• A 'public interest' criterion is often used, though not always legally mandated for de-identified data.
• Legal requirements for data sharing typically apply to identifiable data, not de-identified datasets.

Purpose of the Study:

• To argue for the ethical necessity of a public interest criterion for de-identified data use on government-funded platforms.
• To explore the ethical justifications for imposing such criteria even without strict legal mandates.
• To highlight the role of public interest in responsible data governance.

Main Methods:

• Ethical argumentation and policy analysis.
• Examination of existing data sharing practices and legal frameworks.
• Discussion of the implications for research ethics and public trust.

Main Results:

• A public interest test is ethically essential for de-identified data use on government platforms.
• It enables the promotion of public good and mitigation of research-related harms, such as stigmatization of populations.
• It aligns data governance with public norms and enhances platform trustworthiness.

Conclusions:

• Government-funded data platforms should implement public interest criteria for de-identified data sharing.
• This ethical framework supports responsible research, protects vulnerable groups, and fosters public trust in data initiatives.
• Adopting a public interest standard is crucial for the social license and long-term sustainability of data platforms.