A future worth
drawing carefully.
Hypatia / hyJournal is a case study in what participant-directed research infrastructure could look like. This is a design discussion, not a working clinical service.
No protected service is embedded or connected here. There are no links to private records. “hyJournal” names the future architecture concept below.
Consent first.
Custody by design.
Participant choices
Plain-language, study-specific permissions. Optional local biometric device unlock; no central biometric store proposed.
Consent receipts
Versioned records of purpose, permission, and withdrawal. Receipts prove what was recorded, not that consent was informed.
Separate identity custody
Restricted identity vault and study-specific tokens. Pseudonyms are not deidentification.
Encrypted off-chain data
Scoped access to encrypted records outside any public ledger. Key management and recovery need independent validation.
Purpose-bound analysis
Separate opt-ins for AI analysis and model training. Access logs, limited exports, and human oversight.
Follow-up & safety recall
A controlled recontact route for safety issues. Clear custody, escalation, and withdrawal responsibilities.
Revocation has real limits.
Stopping future access cannot reliably erase prior analyses, published results, exported copies, or information learned by a trained model. Legal retention and safety duties may require limited continued custody. Those limits must be explained before collection.
Security is work, not a diagram.
Before any use, the concept would need a threat model, identity and key-recovery design, governance, incident response, accessibility review, independent security assessment, and study-specific ethical and regulatory review.
What this site actually does
This civic site supports email verification, private signatures, and moderated public discussion. It collects no study records, biometric templates, clinical measurements, or AI-training permissions.
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