Advancing precision medicine through agile governance
Bridging innovation and regulation for the greater good
The convergence of Fourth Industrial Revolution technologies, including genome editing and artificial intelligence, are revolutionizing modern medicine. At the nexus of these tools sits the emerging field of precision medicine, an area of immense potential which is increasingly attracting attention. Precision medicine uses personal information, such as DNA sequences, to prevent, diagnose, or treat disease. From targeting late-stage cancers to curing rare genetic diseases, precision medicine is poised to impact millions of people within the next decade. Despite such promise, this form of healthcare is not without unique challenges. Data storage and tracking, inefficient regulatory processes, and complex supply-chains all create barriers and bottlenecks that hamper the equitable delivery of precision medicine to society. Governments aiming to integrate precision medicine into their healthcare systems must find a way of overcoming technological, ethical, and legal challenges. Fortunately, an agile governance approach offers essential tools and processes capable of promoting technology innovation while safeguarding the public from unintended consequences.
This report builds on the “A blueprint for technology governance in the post-pandemic world” by Landry Signé and Steven Almond and on governance work from the World Economic Forum.[1] We describe the process of precision medicine, from basic research to patient care, highlighting key challenges along the way, and describe the role agile governance can play in overcoming these challenges. Next, we provide global case studies highlighting how governments, companies, and other stakeholders are using agile governance processes to prepare their countries and industries for precision medicine.
Unmet medical needs and inefficiencies drive healthcare innovation with the goal of protecting and promoting health for individuals and society at large. Leveraging the latest technologies to improve treatment regimens, store patient data, and track outcomes is essential for a country to reach their healthcare goals amidst changing environmental, economic, and social conditions. While traditional governance and oversight mechanisms, like federal health agencies and clinical trial testing, can successfully regulate and monitor advancements in healthcare, additional processes, collectively referred to as “agile governance,” play a vital role in helping governments keep pace with emerging technologies while serving the greater good. Agile governance, as defined by the world Economic Forum, “calls for a multistakeholder effort, in which the public and private sectors collaborate to develop forward-thinking solutions to encourage industry growth, while addressing the concerns of a fast-paced digital world.”[2] Agile governance also ensures accountability through human-centric processes designed for the benefit of citizens.[3]
Precision medicine is an approach to healthcare that uses personal information, including genetic, environmental, and lifestyle data, to improve the prevention, diagnosis, and treatment of disease. Alongside the positive potential of precision medicine exists concerns of data-sharing, patient privacy, and equitable access to treatments. The enormous potential and rapid pace of innovation, paired with anticipated risks and unintended consequences, makes precision medicine an ideal technology area for agile governance.