Advancing the ethical use of digital data in human research: challenges and strategies to promote ethical practice

The proliferation of digital data and internet-based research technologies is transforming the research landscape, and researchers and research ethics communities are struggling to respond to the ethical issues being raised. This paper discusses the findings from a collaborative project that explore...

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Bibliographic Details
Published in:Ethics and information technology 2019-03, Vol.21 (1), p.59-73
Main Authors: Clark, Karin, Duckham, Matt, Guillemin, Marilys, Hunter, Assunta, McVernon, Jodie, O’Keefe, Christine, Pitkin, Cathy, Prawer, Steven, Sinnott, Richard, Warr, Deborah, Waycott, Jenny
Format: Article
Language:English
Subjects:
Computer Science
Data integrity
Data management
Digital data
Ethical standards
Ethics
Guidelines
Human subjects
Information sharing
Informed consent
Innovation/Technology Management
Library Science
Management of Computing and Information Systems
Original Paper
Professional ethics
Research data management
Research ethics
Research methodology
Resource management
User Interfaces and Human Computer Interaction
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Summary:The proliferation of digital data and internet-based research technologies is transforming the research landscape, and researchers and research ethics communities are struggling to respond to the ethical issues being raised. This paper discusses the findings from a collaborative project that explored emerging ethical issues associated with the expanding use of digital data for research. The project involved consulting with researchers from a broad range of disciplinary fields. These discussions identified five key sets of issues and informed the development of guidelines orientated to meet the needs of researchers and ethics committee members. We argue that establishing common approaches to assessing ethical risks of research involving digital data will promote consistency in the ethical standards for research, enable the smooth functioning of ethics committees, and sustain public confidence in research. We conclude with recommendations for the development of educational resources for ethics committees, data management guidelines and further public education.
ISSN:1388-1957
1572-8439
DOI:10.1007/s10676-018-9490-4