[News] From HeLa Cells to Digital Health: Navigating the Promises and Pitfalls of Modern Clinical Research

In today’s rapidly evolving landscape, digital health innovations, driven by advanced technologies such as artificial intelligence and robotics, are reshaping clinical research in some promising ways. However, the pressing need for equity as relates to both the tech industry and healthcare makes digital health a very complex challenge. This article explores the current state of data, data’s role in digital health and clinical research, old and emerging concerns vis-à-vis health inequities, and a vision for an equitable digital future that empowers patients and ensures inclusivity in clinical research.

The Complex Landscape of Data Ownership, Rights, and Controls

In the digital age, vast amounts of data are generated and processed, raising critical questions about data ownership, rights, and controls. These questions include how we define these concepts, how they are interpreted, and how they work in practice.

Data ownership typically lies with the entity that creates or collects the data, though this can vary based on context and agreements.1 Data rights encompass privacy, access, rectification (the right to have one’s personal data corrected if inaccurate or incomplete),2 and portability (the right to transmit or receive one’s personal data in an accessible format),3 regulated by laws such as General Data Protection Regulation in Europe,4 California Consumer Privacy Act in the United States,5 and Health Insurance Portability and Accountability Act (HIPAA)6 for health data in the United States. Data controls involve technical measures like encryption and organizational policies to protect data integrity and security.7

READ THE FULL ARTICLE