Leapfrogging with Genomic Data Workstream

March 29, 2020

Genomic and genetic data – the digitized record of a person’s DNA – is an especially sensitive form of human health data, and its collection and use support the scientific research and improved diagnostics and treatments that underscore precision medicine. Genomic and genetic data collection is accelerating, including in low- and middle-income countries (LMICs) and emerging economies, to fill critical gaps in the understanding of populations not traditionally included in research and to support more precise clinical care.

Without future-looking policies that address genomic and genetic data collection and use in research, countries face two main risks: 1) their data does not inform scientific research that may lead to more population-relevant screening guidelines, diagnostics, and treatments; or 2) their data may be used by and primarily benefit outside parties. Without future-looking policies that address genomic and genetic data collection and use in clinical care, countries may inadvertently slow the adoption of advancing healthcare approaches that can improve patient care pathways.

To help mitigate these risks, the World Economic Forum’s Precision Medicine team launched the Leapfrogging with Genomic Data workstream. Key outputs of the Leapfrogging with Genomic Data workstream are 1) a whitepaper with a high level, forward-looking, scalable policy framework and exploration of six ethical tensions; and 2) a companion guide presenting case studies and key questions on each ethical tension. These documents will be published by summer 2020.

Currently available are a Genomic Data Policy Resource Guide, which offers a review of prevailing laws, regulations, guidelines and commentary addressing consent, data privacy, data access, and benefit-sharing of health and genomic data; a Leapfrogging with Genomic Data Workshop Insight Report from our 18 July 2019 multi-stakeholder workshop; and a Guide to Scenario Vignette Workshops, which is modeled on our 18 July approach and will help you design future thinking workshops for your stakeholders.

The World Economic Forum’s Precision Medicine team seeks opportunities to learn from local customization as well as refine the ideas in their whitepaper through test cases developed in collaboration with interested organizations. Please contact Elissa Prichep at Elissa.Prichep@weforum.org if your government or organization has a project underway. As the field of genomics continues to evolve, so will humanity’s knowledge and perspective on how to ethically govern it.