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Retinal Scans and Data Sharing: The Privacy and Scientific Development Equilibrium.
Luis Filipe Nakayama1,2, João Carlos Ramos Gonçalves de Matos1,3, Isabelle Ursula Stewart4
1Massachusetts Institute of Technology, Institute for Medical Engineering and Science, Cambridge, MA.
Mayo Clinic Proceedings. Digital Health
|April 10, 2025
Summary
Sharing ophthalmic data, including retinal scans, is vital for artificial intelligence (AI) in ophthalmology. Secure data-sharing environments and clear agreements are key to advancing AI while protecting patient privacy.
Area of Science:
- Ophthalmology
- Medical Artificial Intelligence
- Data Security
Background:
- Artificial intelligence (AI) models in ophthalmology rely heavily on extensive ancillary imaging data.
- Developing AI for real-world application requires robust data sharing for validation, collaboration, and bias assessment.
- Legal and ethical considerations pose significant challenges to ophthalmic data sharing.
Purpose of the Study:
- To review the challenges and consequences of limited ophthalmic dataset sharing in digital innovation.
- To explore potential solutions for enabling safer sharing of retinal scan data.
- To highlight the importance of secure data environments for AI development in ophthalmology.
Main Methods:
- Review of current literature on ophthalmic data sharing practices and security measures.
- Analysis of proposed solutions including patient consent, data-sharing agreements, and federated learning.
- Evaluation of deidentification techniques such as image manipulation and synthetic data generation.
Main Results:
- No single solution guarantees secure ophthalmic data sharing; a multi-faceted approach is necessary.
- Federated learning offers decentralized development but has limited results and unknown risks.
- Trusted research environments with data use agreements and researcher credentialing are crucial.
Conclusions:
- Ophthalmic data sharing, including retinal scans, must occur within secure, trusted research environments.
- Balancing data accessibility with security requires careful risk assessment and accountability.
- Implementing robust data governance frameworks is essential for the responsible advancement of AI in ophthalmology.

