Health Data Ownership?
Proposed Categories of Health Data Ownership
1. First Degree Ownership or Citizen Ownership of Health Data
First degree ownership resides with a private citizen (i.e. the individual from who’s body the health data is derived).
Many companies, research institutes and hospitals (especially in the US) currently claim ownership of patient data. Regardless, it's likely at some point digital human rights will evolve with a global "gold" standard emerging that recognizes the patient as the legitimate owner of their data. Written consent will evolve to dynamic, real-time, revocable consent. Large, global data sharing projects could likely require entities be subject to audits to prove authorized use.
Deploying first degree ownership of genetic data provides a strong foundation for any project wanting to work with human data on a global basis for years to come.
2. Second degree ownership — Legal Guardians of Citizen Health Data
Second degree ownership refers to the entity that is legally responsible for damages and/or fines due to potential harms associated with security/privacy breaches of an individual(s) health data above.
These guardian entities serve like “biological domain registrars”. Ideally there would be several trusted entities within each country for users to choose among based on who they trusted with their data. Patients could then authorize these entities to access and share information as they saw fit.
3. Third degree ownership — Creators of derived works pertaining to health data.
Third degree ownership consists of the legal rights and responsibilities from derived works (i.e. discovery of new drugs) based on insights gained from access to population studies.
1. First Degree Ownership or Citizen Ownership of Health Data
First degree ownership resides with a private citizen (i.e. the individual from who’s body the health data is derived).
Many companies, research institutes and hospitals (especially in the US) currently claim ownership of patient data. Regardless, it's likely at some point digital human rights will evolve with a global "gold" standard emerging that recognizes the patient as the legitimate owner of their data. Written consent will evolve to dynamic, real-time, revocable consent. Large, global data sharing projects could likely require entities be subject to audits to prove authorized use.
Deploying first degree ownership of genetic data provides a strong foundation for any project wanting to work with human data on a global basis for years to come.
2. Second degree ownership — Legal Guardians of Citizen Health Data
Second degree ownership refers to the entity that is legally responsible for damages and/or fines due to potential harms associated with security/privacy breaches of an individual(s) health data above.
These guardian entities serve like “biological domain registrars”. Ideally there would be several trusted entities within each country for users to choose among based on who they trusted with their data. Patients could then authorize these entities to access and share information as they saw fit.
3. Third degree ownership — Creators of derived works pertaining to health data.
Third degree ownership consists of the legal rights and responsibilities from derived works (i.e. discovery of new drugs) based on insights gained from access to population studies.
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