Whose Data Are They? Data Ownership and Sovereignty in Oral Health Research

Area of Science:

• Oral health research
• Community-based participatory research
• Health equity

Background:

• Community-based participatory research (CBPR) is vital for engaging marginalized populations in oral health research.
• Ethical challenges arise concerning data control, equity, ownership, and sovereignty in CBPR.
• Vulnerable populations include Two-Spirit, lesbian, gay, bisexual, transgender, queer or questioning, and other sexual orientations and gender identities (2SLGBTQ+) individuals, Indigenous peoples, and racial/ethnic minorities.

Purpose of the Study:

• To explore data access, control, and sovereignty issues in CBPR involving vulnerable populations.
• To examine the ethical and legal challenges in oral health research data management.
• To promote best practices for inclusive research and ethical data stewardship.

Main Methods:

• Symposium held at the American Association for Dental, Oral, and Craniofacial Research annual meeting in March 2025.
• Exploration of complex dynamics of data access, control, and sovereignty.
• Presentation of case studies showcasing collaborative approaches.

Main Results:

• Symposium highlighted the critical role of data ownership and sovereignty in advancing oral health equity.
• Best practices for ethical data stewardship and inclusive research were emphasized.
• Multifaceted frameworks integrating cultural values were advocated for equitable outcomes.

Conclusions:

• Prioritizing community voices, rights, and meaningful integration is essential.
• Ethical data stewardship is critical for big data and community-based oral health research.
• Actionable frameworks can help build trust and ensure culturally sensitive outcomes.