Data authority: Public debate about personalized medicine in Denmark

Area of Science:

• Health Informatics
• Sociology of Science and Technology
• Bioethics

Background:

• Personalized medicine drives significant investment in health data integration.
• Increased data sharing among stakeholders raises critical questions about data access, purpose, and regulation.
• The concept of 'data authority' is introduced to frame legitimate data use and control.

Purpose of the Study:

• To analyze the public debate surrounding personalized medicine in written media.
• To understand how 'data authority' is negotiated within this debate.
• To identify patterns in regulatory changes related to health data governance.

Main Methods:

• Analysis of public discourse in written media concerning personalized medicine.
• Examination of negotiations surrounding data authority.
• Identification of selective regulatory adjustments.

Main Results:

• The public debate on personalized medicine lacks consensus.
• Despite the lack of consensus, selective regulatory changes are emerging.
• These changes prioritize the protection of individual autonomy.
• Concerns regarding commercial interests in health data remain unaddressed.

Conclusions:

• Data authority in personalized medicine is characterized by persistent conflict.
• This conflict is integral to personalized medicine as a sociotechnical phenomenon.
• Ongoing negotiation of data authority shapes the landscape of personalized medicine.