RDA Sensitive Data Interest Group: Goals and Roadmap
Résumé
As sensitive data are increasingly used for research purposes, reducing the risk of data misuse has become particularly crucial. At the same time, as demonstrated during the COVID19 crisis, sharing high-quality data is a sine qua non to assess and compare research results and to leverage data to their fullest capacity.
The Sensitive Data Interest Group aims to promote the FAIR principles and reproducible research, while drawing attention to the unique risks associated with sensitive data and exploring mitigation strategies for these risks. Synthesis research that aggregates data at large scales often uses several kinds of sensitive data, but the ethical and legal issues are often not fully addressed, especially when harmonising differing ethical and legal considerations across regions. Further complicating matters, “sensitive data” are often not even defined in the same way. As a result, reproducing research in different regions or contexts is often difficult, and sensitive data sharing processes are not well sustained.
In this poster, our group proposes the following working definition of sensitive data, adapted from David et al., 2020, “Templates for FAIRness evaluation criteria - RDA-SHARC IG” https://zenodo.org/record/3922069#.YCJU7ehKg2w :
Information that is regulated by law due to possible risk for plants, animals, individuals and/or communities and for public and private organisations. Sensitive personal data include information related to racial or ethnic origin, political opinions, religious or philosophical beliefs, trade union membership and data concerning the health or sex life of an individual. These data that could be identifiable and potentially cause harm through their disclosure. For local and government authorities, sensitive data is related to security (political, diplomatic, military data, biohazard concerns, etc.), environmental risks (nuclear or other sensitive installations, for example) or environmental preservation (habitats, protected fauna or flora, in particular). The sensitive data of a private body concerns in particular strategic elements or elements likely to jeopardise its competitiveness.
Our Sensitive Data IG will workshop this definition and present a summary of the aims of the group and our charter under the RDA validation process. Through the Sensitive Data IG, we aim to provide a forum for a range of communities to share their requirements and jointly develop strategies, support, recommendations and guidelines relevant to sensitive data. We propose defining common goals around how to address the risk associated with different types of sensitive data (e.g. ecological data, indigenous data, human health data, etc.), as well as to responsibly disseminate, aggregate, and use preexisting heterogeneous sensitive data at a global scale. This group will partner with other IGs and WGs to produce recommendations and guidelines around sensitive data (for example, “Sensitive Data Toolkit for Researchers Part 2: Human Participant Research Data Risk Matrix”, https://zenodo.org/record/4088954#.YFZCUq_7Q2w) . We welcome participation and contributions from the entire RDA community and more broadly.
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