Whose Data Is It, Really?
February 25, 2026
Whose Data Is It, Really?
The Illusion of Possession
For decades, medicine has spoken about patient data as though it were property — something one could own, trade, or license like land or stock. That metaphor once seemed protective, granting patients control over how their information was used. But in the digital age, ownership has become a trap: it implies exclusivity where collaboration is necessary and simplicity where complexity reigns.
Data is not an object; it is a relationship. Each entry in a record binds patient, clinician, institution, and society in a shared act of meaning. To “own” it absolutely would require owning everyone else’s contribution — an impossibility both moral and mathematical.
The Anatomy of a Record
A medical record is never authored by one party. It is co-constructed:
- Patients provide facts, histories, and consent.
- Clinicians interpret and encode those facts.
- Institutions standardize and secure them.
- Researchers and regulators derive secondary knowledge for the public good.
Each participant exercises a different form of authority — none of which equates to outright ownership. To speak of “my data” in isolation erases the chain of collaboration that makes it credible.
The Failure of Property Law
Property law governs scarcity; information multiplies when shared. Owning data therefore contradicts its nature. Once copied, data ceases to be possessable in any classical sense; control must shift from exclusion to governance.
When legal systems attempt to enforce property analogies — data deeds, personal licensing — they end up freezing what should flow. Innovation stalls, privacy paradoxically weakens, and value diffuses through litigation instead of learning.
What health systems need is not ownership but stewardship — custody governed by duty rather than entitlement.
From Rights to Responsibilities
Stewardship reframes control as obligation. It asks not “Who owns this?” but “Who ensures it is used justly?” This shift transforms the patient from a proprietor into a stakeholder and the clinician from a recorder into a custodian.
Federated frameworks such as Circle Datasets operationalize that philosophy. Each participating site retains control of its data environment, enforces local ethics and privacy rules, and contributes only validated, policy-compliant derivatives to the network. Control becomes procedural, not proprietary.
The Procedural Justice of Data Use
Procedural justice is the moral twin of stewardship. It ensures that fairness is maintained not by static rights but by transparent processes. Every step — collection, transformation, access, analysis — is recorded and reviewable. The integrity of use replaces the illusion of possession.
Patients are protected not because they “own” data but because they can audit its movement, see its purpose, and revoke participation at any stage. Trust arises from observability, not slogans.
Economics of Stewardship
Investors and institutions increasingly recognize that verified custody creates more durable value than contested ownership. Data whose lineage is proven, access controlled, and consent renewable commands a premium in regulatory and commercial markets. Circle Datasets therefore transform ethical governance into a competitive advantage — compliance as brand equity.
Markets built on stewardship outperform those built on possession because they scale without exploitation.
The Moral Resolution
To ask “Whose data is it?” is to ask the wrong question. The right question is “Who is responsible for it now?” In a federated world, that answer is plural: responsibility is distributed, continuous, and auditable.
Ownership ends where obligation begins. Data, like care itself, is not something one keeps but something one keeps safe.
Selected References
- RegenMed (2025). Circle Datasets Meet the Challenges of Federated Healthcare Data Capture. White Paper.
- Solove, D. J. (2021). Privacy and Data Protection in the Modern State. Yale Law Journal.
- OECD (2024). Governance Models for Federated Health Data Systems.
- European Commission (2024). GDPR Interpretations for Federated AI and Health Research.
Get involved or learn more — contact us today!
If you are interested in contributing to this important initiative or learning more about how you can be involved, please contact us.
Whose Data Is It, Really?
February 25, 2026
The Illusion of Possession
For decades, medicine has spoken about patient data as though it were property — something one could own, trade, or license like land or stock. That metaphor once seemed protective, granting patients control over how their information was used. But in the digital age, ownership has become a trap: it implies exclusivity where collaboration is necessary and simplicity where complexity reigns.
Data is not an object; it is a relationship. Each entry in a record binds patient, clinician, institution, and society in a shared act of meaning. To “own” it absolutely would require owning everyone else’s contribution — an impossibility both moral and mathematical.
The Anatomy of a Record
A medical record is never authored by one party. It is co-constructed:
- Patients provide facts, histories, and consent.
- Clinicians interpret and encode those facts.
- Institutions standardize and secure them.
- Researchers and regulators derive secondary knowledge for the public good.
Each participant exercises a different form of authority — none of which equates to outright ownership. To speak of “my data” in isolation erases the chain of collaboration that makes it credible.
The Failure of Property Law
Property law governs scarcity; information multiplies when shared. Owning data therefore contradicts its nature. Once copied, data ceases to be possessable in any classical sense; control must shift from exclusion to governance.
When legal systems attempt to enforce property analogies — data deeds, personal licensing — they end up freezing what should flow. Innovation stalls, privacy paradoxically weakens, and value diffuses through litigation instead of learning.
What health systems need is not ownership but stewardship — custody governed by duty rather than entitlement.
From Rights to Responsibilities
Stewardship reframes control as obligation. It asks not “Who owns this?” but “Who ensures it is used justly?” This shift transforms the patient from a proprietor into a stakeholder and the clinician from a recorder into a custodian.
Federated frameworks such as Circle Datasets operationalize that philosophy. Each participating site retains control of its data environment, enforces local ethics and privacy rules, and contributes only validated, policy-compliant derivatives to the network. Control becomes procedural, not proprietary.
The Procedural Justice of Data Use
Procedural justice is the moral twin of stewardship. It ensures that fairness is maintained not by static rights but by transparent processes. Every step — collection, transformation, access, analysis — is recorded and reviewable. The integrity of use replaces the illusion of possession.
Patients are protected not because they “own” data but because they can audit its movement, see its purpose, and revoke participation at any stage. Trust arises from observability, not slogans.
Economics of Stewardship
Investors and institutions increasingly recognize that verified custody creates more durable value than contested ownership. Data whose lineage is proven, access controlled, and consent renewable commands a premium in regulatory and commercial markets. Circle Datasets therefore transform ethical governance into a competitive advantage — compliance as brand equity.
Markets built on stewardship outperform those built on possession because they scale without exploitation.
The Moral Resolution
To ask “Whose data is it?” is to ask the wrong question. The right question is “Who is responsible for it now?” In a federated world, that answer is plural: responsibility is distributed, continuous, and auditable.
Ownership ends where obligation begins. Data, like care itself, is not something one keeps but something one keeps safe.
Selected References
- RegenMed (2025). Circle Datasets Meet the Challenges of Federated Healthcare Data Capture. White Paper.
- Solove, D. J. (2021). Privacy and Data Protection in the Modern State. Yale Law Journal.
- OECD (2024). Governance Models for Federated Health Data Systems.
- European Commission (2024). GDPR Interpretations for Federated AI and Health Research.
Get involved or learn more — contact us today!
If you are interested in contributing to this important initiative or learning more about how you can be involved, please contact us.
