7 Research, Sample, and Data Sharing During Outbreaks, Pandemics, and Beyond

Abstract

AbstractThe agreement at the time the human genome was first sequenced to release the data to the public domain set an example that encouraged other scientists doing other types of research to share their data freely to empower scientific discovery and minimize the burden of disease. There are still many barriers to data sharing, including how to ensure patient privacy, manage intellectual property, and reduce inequity in data reuse, with a one-way flow of raw data from less developed countries to wealthy countries and corporations that produce medical countermeasures that may first go to the highest bidder. In an era of increasing infectious disease outbreaks, ensuring the efficient exchange of research data is essential to expeditious response to emerging pathogens, especially in the urgent case of a potential or actual pandemic. This chapter will review principles of open access to research highlighted by the coronavirus disease 2019 (COVID-19) pandemic and current challenges to establishment of a global data-sharing system meeting the needs and interests of all the stakeholders, that is, every living human being.