Privacy, Data Ethics & Archival Governance

I. The Ethical Mandate of the P.E.N. Successor

Unlike standard commercial websites, PolioNet operates as a digital successor to a registered charity (The Polio Experience Network, P.E.N., founded 1997). This creates a unique dual-layer privacy responsibility:

1. The Legacy Layer: Protection of the 1997–2004 physical and digital survey data.
2. The Modern Layer: Protection of 2026 site visitors and Archive Desk correspondents.

We do not merely “comply” with privacy laws; we adhere to the ethical standards of medical historiography, ensuring that the voices of polio survivors are preserved without compromising their individual identities.

II. Treatment of the 1997–2004 Legacy Archives

The core of PolioNet consists of restored SQL databases and physical bulletins originally compiled by the P.E.N. organization.

1. Anonymization by Default

Every legacy survey and clinical “experience report” restored for this site undergoes a De-Identification Audit. We strip:

• Full names and residential addresses.
• Specific hospital admission numbers from the 1950s/60s.
• Contact details of next-of-kin.

2. The “Right to be Forgotten” in History

If you were a participant in the original 1997 P.E.N. surveys and wish for your specific clinical narrative to be removed from the 2026 restoration, PolioNet provides an expedited removal process via the Archive Desk.

III. Data Collection: The “No-Tracking” Philosophy

In an era of aggressive digital marketing, PolioNet adopts a Minimalist Data Footprint.

1. Zero Third-Party Data Sales

We do not, under any circumstances, sell survivor data to pharmaceutical companies, medical device manufacturers, or insurance providers. Our funding is independent, ensuring that your interaction with our “Cold Blue” or “Neuromuscular Fatigue” guides remains private.

2. Clinical Search Privacy

We recognize that searching for symptoms like Post-Polio Syndrome is sensitive. PolioNet does not utilize invasive “fingerprinting” techniques to track your medical interests across other websites.

IV. The Archive Desk: Secure Correspondence

When you contact the Archive Desk (AD-RESTORATION-2026), your data is handled under strict “Research Confidentiality” protocols.

• What we collect: Your provided name, email address, and the nature of your inquiry (e.g., “Archive Contribution”).
• Retention Policy: We retain correspondence only as long as necessary to fulfill the archival request or correction.
• Data Siloing: Inbound emails regarding clinical history are stored in an encrypted silo, separate from standard administrative traffic.

V. GDPR & International Archival Compliance

Because the P.E.N. charity was rooted in the United Kingdom, PolioNet voluntarily adheres to the UK GDPR and the Data Protection Act 2018, regardless of the visitor’s geographic location.

• Right of Access: You may request a digital transcript of any personal data we hold about your interaction with the archive.
• Data Portability: We can provide your submitted survivor narratives in a machine-readable format should you wish to move them to a different clinical research project.

VI. Technical Safeguards: 2026 Standard

• Encryption: All traffic to PolioNet is forced over SSL/TLS 1.3 encryption.
• Server Location: We prioritize hosting environments that respect the “Privacy Shield” and archival integrity standards.
• Plugin Audit: We strictly limit the number of active WordPress plugins to minimize potential “data leaks” to third-party developers. (For example, we have intentionally removed the Google Site Kit to reduce third-party tracking).

VII. Affirmation of Integrity

By accessing the PolioNet archive, you are engaging with a project dedicated to the Pathophysiology of PPS (PMC10123742) and the preservation of the BBC Inside Out East legacy. Our privacy policy is not a generic legal hurdle; it is our commitment to the dignity of the polio survivor community.