Balancing ethical considerations and Open Science principles when sharing community relevant data

High quality data are required to provide the best possible grounds for evidence-based decision making. Today’s complex societal issues require that data in its broadest understanding is openly shared among stakeholders. This to ensure that all interests are taken into consideration and consequences, both positive and negative, can be appropriately analysed and addressed. Engaging local and affected communities in this process has proven to be highly relevant as they both provide access to context specific, cultural and sensitive knowledge, and the validation of data gathered and its control thereof, often hard for ‘outsiders’ to research. By involving affected populations in the right way, data sharing can empower communities and advance research. However, this process is not without challenges. Establishment of rights to data—to encompass personal privacy as a protection of self-image, or the right to control data about yourself—is potentially in conflict with the goals of open science and advancing research, and/or with legislations aimed at protecting those very rights.    

These challenges increase in times of crisis where communities may be exposed to dramatically changing life conditions which require rapid and efficient sharing of data between various stakeholders in order to minimise loss of life and livelihoods. 

The aim of this session was to compare sector-specific challenges, identify common problems, highlight specificities, pinpoint best practices and create recommendations for sharing community relevant data. We are particularly interested in the status of shared stewardship, and how alignment with relevant legislation is accomplished unless making the data openly accessible is against the legitimate interest of the research or the personal data protection principles commonly summed up with the phrase ‘as open as possible, as closed as necessary’.

Version 2 corrects some organisational addresses.