Digital data presents researchers and ethics committees with familiar and novel ethical issues. Accepted strategies for managing issues such as privacy and confidentiality, and informed consent, need rethinking. The qualities of digital data, including its mobility and replicability, present new kinds of ethical issues which emerge in relation to data governance, data security and data management.
This document has five parts.
Part A discusses key features of digital data and explains how these guidelines were developed. Guidelines for researchers and human research ethics committees are presented in Parts B and C.
Part B addresses researchers and discusses five categories of key ethical issues and poses related guiding questions to consider when conducting research involving digital data:
• Privacy and confidentiality
• Ownership and authorship
• Data governance and custodianship
• Data sharing: assessing the social benefits of research
Part C addresses members of human research ethics committees and provides guiding questions for reviewing projects involving the use of digital data.
The guidelines in Part B and C are formulated as discussions of key issues and arising questions. They are not intended to be prescriptive, but rather to contextualise and focus on key ethical risks in research involving digital data.
Part D is a glossary of key terms used in the document.
Part E lists resources that have informed the development of these guidelines and others which readers may find useful.