Governing Personalized Health: A Scoping Review

Area of Science:

• Genomics and Health Policy
• Personalized Medicine Governance

Background:

• Genetic research advancements are driving the development of personalized health interventions.
• Integrating personalized health into existing healthcare systems presents significant policy challenges.

Purpose of the Study:

• To conduct a thematic scoping review of literature on the governance and policy of personalized health.
• To identify key challenges for policymakers in implementing personalized health.

Main Methods:

• Thematic scoping review of academic literature.
• Analysis of policy and governance aspects of personalized health.

Main Results:

• Four major governance challenges identified: extending research infrastructure for data integration, building public trust in applications like genetic tests, regulating data production and sharing to prevent discrimination and facilitate collaboration, and integrating personalized health into existing regulatory, financing, and service structures.
• Need for harmonized genetic data research infrastructures.
• Importance of trust and regulation in personalized health applications.

Conclusions:

• Personalized health governance requires addressing data infrastructure, public trust, data regulation, and system integration.
• Findings provide guidance for future policymaking and research in personalized health governance.