Governance :: Precision Medicine
Precision Medicine Vision Statement :: A Product of the World Economic Forum Global Precision Medicine Council
World Economic Forum
May 2020 :: 46 pages
The benefits of precision medicine in terms of superior health and healthcare outcomes are increasingly clear, but there are challenges to the equitable and widespread dissemination of precision medicine tools, technologies and solutions.
The World Economic Forum convened more than 40 leaders from the public and private sectors, civil society and academia in a Global Precision Medicine Council (the Council) in 2019 to help shape the governance of precision medicine in the public interest. This document is the Council’s synthesis of the key policy and governance gaps, and its vision for the solutions to overcome them. It should serve as a reference for the greater healthcare community with an interest in helping deliver these benefits on a global basis.
These five governance gaps are:
1) data sharing and interoperability;
2) ethical use of technology;
3) patient and public engagement and trust;
4) access, delivery, value, pricing and reimbursement;
5) responsive regulatory systems.
Using illustrative examples of solutions or analytical frameworks to overcome these five gaps, the Council provides areas of opportunity to accelerate precision medicine approaches globally. The main considerations and recommendations include:
– Increasing awareness of the benefits of data standardization and interoperability and fostering trusted mechanisms of collaboration involving patients to unlock the vast amounts of data needed
– Learning lessons from research efforts that were discriminatory or hurtful and focusing new efforts on inclusivity and representativeness to support ethical technology development
– Building public and patient trust and engagement by encouraging deliberation and mechanisms on if/how genetic and other sensitive health data are accessed or used by commercial companies and law enforcement
– Innovating intellectual property protection regimes for biomarkers and algorithms as part of the process of incentivizing investment in foundational new diagnostics
– Funding and publicly reporting post-market clinical trials and studies for fast-track therapeutics that allow healthcare providers to clearly understand the value of precision medicine treatments and receive payments based on performance
– Designing and implementing consistent and appropriate regulatory frameworks that protect the health information generated from direct-to-consumer genetic services in a way that support the values of patients and participants
Unfortunately, more than half of the world’s population still has no access to precision medicine and is unable to reap the benefits. We must be ever vigilant about increasing the capabilities of many countries and populations to join this global movement towards more personalized and targeted ways of screening, preventing, diagnosing, treating and curing patients with disease. The importance of worldwide access and of addressing these inequities is urgent. With this in mind, the Council aims to contribute positively to the global debate and activity by framing solutions that may be scalable and useful in many settings, as well as by identifying ongoing challenges that remain resistant to solutions in order to focus new creativity on finding appropriate paths forward.