Ethical Issues in Data Sharing and Archiving

Abstract

Worries about the status of informed consent or unintended use of personal information of data collected from the research process are often viewed as an obstacle to collating existing data for reuse. It may seem that when research “data” are shared, there is a risk of eroding the trust initially established in the researcher-participant relationship. With the General Data Protection Regulation (GDPR) in Europe gaining so much recent attention in the world of research, there can be a confusion between the roles that ethical, legal, and moral duties play and represent, and how the principles of open science can mesh with the concept of open data.

In this chapter some of the issues as they relate to data sharing are elucidated, and how access to data can be safely and successfully managed through a robust and trusted governance framework is demonstrated. The principles of research integrity can be met while paying close attention to ethical duties. Challenges for non-research sources where various protections that usually apply in the traditional social research data life cycle may not have taken place are also covered. With the potential risk of disclosure that increases with the capacity to link multiple data sources, the use of informed consent and the “Five Safes” protocol to ensure safe access to data are considered.

Finally, with the pressure for research transparency and reproducibility high on the research agenda, the practical steps that can be taken to document how data have been collected and treated are considered, ensuring that ethical processes are captured.