Genomic data collection is accelerating in historically understudied and excluded populations. The information will fill knowledge gaps, spur medical discoveries and lead to more targeted and appropriate care; however, it comes with significant risk if ungoverned. Insufficient genomic data policies expose communities to the risk that certain actors will extract information from their population and use it for their own benefit. These risks have been realized in the past and will occur again. To address them and prompt action, the World Economic Forum collaborated with 30 global leaders to develop a forward looking, scalable policy framework and set of six ethical tensions, as well as a companion guidance document, that policy makers, business leaders, researchers, community members and others can leverage and modify for use in a local context.
The Genomic Data Policy Framework and Ethical Tensions Whitepaper has a companion guide, Addressing Ethical Tensions in Genomic Data Policy: Case Studies and Learnings, offering a collection of case studies and set of questions to prompt deeper discussions about ethical tensions pertinent to the collection and use of genomic data.offering a collection of case studies and set of questions to prompt deeper discussions about ethical tensions pertinent to the collection and use of genomic data.