Open Science, Health Data and Epistemic Harms: A Multidisciplinary Reflection

Area of Science:

• Interdisciplinary research
• Social justice studies
• Health informatics
• Open Science ethics

Background:

• Open Science (OS) aims to democratize knowledge and reduce epistemic inequalities.
• However, critical analyses suggest OS may exacerbate existing structural vulnerabilities, particularly for marginalized populations.
• The dominance of specific norms within OS infrastructures can lead to epistemic harms.

Purpose of the Study:

• To critically examine how Open Science (OS) infrastructures perpetuate epistemic harms.
• To focus specifically on the implications of OS within the health data landscape.
• To explore pathways for realizing the social justice potential of OS in healthcare.

Main Methods:

• Interdisciplinary essay synthesizing critical theory and empirical observations.
• Analysis of OS infrastructures, focusing on knowledge norms, legal regimes, and corporate influence.
• Examination of health data practices within the context of OS.

Main Results:

• OS infrastructures can amplify structural vulnerabilities and perpetuate epistemic harms.
• The dominance of Eurocentric knowledge norms, legal frameworks, and corporate capture are key mechanisms of harm.
• Existing OS models may inadvertently reinforce inequalities rather than reduce them, especially concerning health data.

Conclusions:

• Realizing the social justice potential of OS, particularly in healthcare, requires moving beyond techno-optimism.
• Centering plural epistemologies, relational accountability, and community empowerment is crucial.
• Transformative approaches are needed to ensure OS benefits all communities equitably.