
Genomic Data Policy Framework and Ethical Tensions
This white paper aims to begin addressing the need for new or modified policies by proposing a genomic data policy framework and corresponding set of ethical tensions for policy-makers, b...
Advancing precision medicine in a societally equitable and beneficial way means ensuring that all healthcare systems can adopt the most scientifically and technologically appropriate approaches to a more targeted and personalized way of screening, diagnosing and treating disease. The World Economic Forum’s Leapfrogging with Precision Medicine project will develop a set of tools and case studies demonstrating how a precision medicine approach in countries with greenfield policy spaces can potentially transform their healthcare delivery and outcomes.
The Opportunity
Participating in this project will help partners and stakeholders elucidate foundational elements necessary to develop a precision medicine-ready healthcare system in an emerging economy context, and the necessary policies to support the development and sustainability of these elements. Participants will be able to host or join different pilots in different countries.
This project currently has three active workstreams developing the following outputs:
Workstream 1: Genomic Data Policy and Ethics – A framework on genomic data policy, addressing the topics of consent, privacy, data access, and benefit sharing, as well as tools to help address the ethical tensions inherent in these topics. This workstream aims to support the creation of forward looking policies that reduce the potential risks to populations in low- and middle- income countries caused by the acceleration of genomic data collection. Please see the resources shared on this page.
Workstream 2: Precision Medicine Readiness Principles – A living document where policy-makers and others looking to advance precision medicine can find benchmarks for readiness. This will be developed as a roadmap that identifies distinguishing precision medicine capabilities denoting different tiers of readiness and categories of criteria for progress. This will be tested and iterated over through material pilots, beginning with a hospital system partnership on integrating precision medicine approaches into care delivery.
Anchor project: A case study on genetic education and diagnostic capacity building for cancer care in Rwanda. This project is designed to demonstrate precision medicine approaches for systems with rising rates of NCDs
Impact
The Leapfrogging with Precision Medicine project will enable the testing of scalable mechanisms to support design, implementation and evaluation of precision medicine in emerging economies. Enabling precision medicine in such contexts, potentially by leapfrogging existing or prevailing practices, means that vastly more people will have access to personalized treatments designed to improve outcomes, and streamline and reduce costs.
This white paper aims to begin addressing the need for new or modified policies by proposing a genomic data policy framework and corresponding set of ethical tensions for policy-makers, b...
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 pr...
Addressing Ethical Tensions in Genomic Data Policy: Case Studies and Learnings
This workstream aims to address this issue by developing and testing elements of genomic data policies and a corresponding ethical framework from a “future of healthcare” and patient-cent...
Personalized medicine is the combination of established clinical parameters with emerging molecular information to generate preventative, diagnostic and therapeutic solutions that are tai...
于1997年上映的电影《千钧一发》描绘了这样的一个世界:在未来,人们广泛使用基因编辑技术制造“完美人类”——他们外貌出众、体格强健、智力超群。而那些带着“基因缺陷”自然出生、没有经过编辑的人则被称作“残缺品”。“完美人类”从事着社会上层的工作,而“残缺品”只能清扫大街。
医疗保健正迅速发展成精准医疗,其通过对遗传基因的洞察和技术的进步,加深人们对人体生理学的了解。目前所采用的“一刀切”的方法可能产生意料之外的副作用,而精准医疗则有助于减轻医疗护理给病人带来的不必要的痛苦,同时还能通过洞察数据将无效的治疗方案扼杀在摇篮里,从而降低治疗成本。