RESUMEN
The COVID-19 pandemic has exemplified the importance of interoperable and equitable data sharing for global surveillance and to support research. While many challenges could be overcome, at least in some countries, many hurdles within the organizational, scientific, technical and cultural realms still remain to be tackled to be prepared for future threats. We propose to (i) continue supporting global efforts that have proven to be efficient and trustworthy toward addressing challenges in pathogen molecular data sharing; (ii) establish a distributed network of Pathogen Data Platforms to (a) ensure high quality data, metadata standardization and data analysis, (b) perform data brokering on behalf of data providers both for research and surveillance, (c) foster capacity building and continuous improvements, also for pandemic preparedness; (iii) establish an International One Health Pathogens Portal, connecting pathogen data isolated from various sources (human, animal, food, environment), in a truly One Health approach and following FAIR principles. To address these challenging endeavors, we have started an ELIXIR Focus Group where we invite all interested experts to join in a concerted, expert-driven effort toward sustaining and ensuring high-quality data for global surveillance and research.
Asunto(s)
COVID-19 , Animales , Humanos , COVID-19/epidemiología , Pandemias , Creación de Capacidad , Difusión de la InformaciónRESUMEN
Modern AI supported research holds many promises for basic and applied science. However, the application of AI methods is often limited because most labs cannot, on their own, acquire large and diverse datasets, which are best for training these methods. Data sharing and open science initiatives promise some relief to the problem, but only if the data are provided in a usable way. The FAIR principles state very general requirements for useful data sharing: they should be findable, accessible, interoperable, and reusable. This article will focus on two challenges to implement the FAIR framework for human neuroscience data. On the one hand, human data can fall under special legal protection. The legal frameworks regulating how and what data can be openly shared differ greatly across countries which can complicate data sharing or even discourage researchers from doing so. Moreover, openly accessible data require standardization of data and metadata organization and annotation in order to become interpretable and useful. This article briefly introduces open neuroscience initiatives that support the implementation of the FAIR principles. It then reviews legal frameworks, their consequences for accessibility of human neuroscientific data and some ethical implications. We hope this comparison of legal jurisdictions helps to elucidate that some alleged obstacles for data sharing only require an adaptation of procedures but help to protect the privacy of our most generous donors to research our study participants. Finally, it elaborates on the problem of missing standards for metadata annotation and introduces initiatives that aim at developing tools to make neuroscientific data acquisition and analysis pipelines FAIR by design. While the paper focuses on making human neuroscience data useful for data-intensive AI the general considerations hold for other fields where large amounts of openly available human data would be helpful.