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

Abstract

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.

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Notes

  1. 1.

    There are also the practical difficulties of adopting different processes and practices for managing sensitive digital data through adhering to specific guidelines such as ISO27001/2, a set of information security guidelines used to certify secure data practices. Digital data governance systems require careful development and implementation to ensure data security, and maintain participant confidentiality.

  2. 2.

    The initial workshop “Building an evidence base to support planning for socially connected, equitable communities” was supported by the Carlton Connect Initiatives Fund. Five of the authors of this current article were involved in the organisation of the first workshop and the others were participants in subsequent workshops.

  3. 3.

    This document is currently under review and it is anticipated that an updated version due out in 2018 will include more specific guidelines for working with digital data.

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Acknowledgements

The authors would like to gratefully acknowledge the Carlton Connect Initiative Fund, University of Melbourne.

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Clark, K., Duckham, M., Guillemin, M. et al. Advancing the ethical use of digital data in human research: challenges and strategies to promote ethical practice. Ethics Inf Technol 21, 59–73 (2019). https://doi.org/10.1007/s10676-018-9490-4

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Keywords

  • Bioethics
  • Internet research
  • Digital data
  • Data security
  • Data sharing
  • Privacy/confidentiality
  • Research ethics committees
  • Institutional review boards