Data Sharing and the Idea of Ownership

Area of Science:

• Genomics
• Bioethics
• Health Policy

Background:

• Discussions on personalized medicine often involve data ownership, with individuals frequently viewing their health data as private property.
• Personalized medicine, especially genomics, necessitates aggregating individual data into large datasets, creating a knowledge commons.

Purpose of the Study:

• To analyze the concept of data ownership in personalized medicine.
• To explore the implications of private versus common property notions for genomic data sharing.
• To determine the most appropriate ownership model for genomic information.

Main Methods:

• Conceptual analysis of property law and ethics applied to health data.
• Examination of the justifications and limitations of individual ownership claims.
• Comparison of individual and collective goods in personalized medicine.

Main Results:

• The discourse of ownership in personalized medicine creates a paradox between individual claims and the need for data aggregation.
• Analyzing property concepts clarifies the limits of individual ownership claims for genomic data.
• Ownership may more appropriately reside with health professionals acting as agents of the state.

Conclusions:

• Common ownership of genomic information is more suitable than private ownership in a socialized medicine system like the NHS.
• Genomic data should be considered a commons, with ownership resting collectively rather than individually.
• This approach aligns with the principles of collective benefit in personalized medicine.