An Overview of Data Governance in the Biomedical Economy
New tools for governance and oversight are required to handle the pace of innovation, transformation, and expansion in the digital economy. Here, Dr. Libbie Prescott explores how well-established fiduciaries operate within the biomedical economy as a gateway for understanding how such a concept might work in the digital economy to protect the interests of end-users.
Even in the biomedical economy where self governance is now commonplace, the process of developing a self-governing system for protecting users’ best interests is complex and not necessarily straightforward. This review highlights several challenges, including: balancing overlapping legal requirements, managing the process by which users give informed consent, and building an effective “guild” for digital economy professionals.
Overall, best practices from the biomedical industry suggest that the concept of information fiduciaries has the potential to address critical governance issues in the digital economy. This potential is possible as digital economy stakeholders endorse build trust with end-users by addressing informed consent, improving data practices, and industry self-governance.