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

  • Karin Clark
  • Matt Duckham
  • Marilys Guillemin
  • Assunta Hunter
  • Jodie McVernon
  • Christine O’Keefe
  • Cathy Pitkin
  • Steven Prawer
  • Richard Sinnott
  • Deborah Warr
  • Jenny Waycott
Original Paper
  • 68 Downloads

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.

Keywords

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

Notes

Acknowledgements

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

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Copyright information

© Springer Nature B.V. 2018

Authors and Affiliations

  • Karin Clark
    • 1
  • Matt Duckham
    • 2
    • 3
  • Marilys Guillemin
    • 4
    • 5
  • Assunta Hunter
    • 6
  • Jodie McVernon
    • 7
  • Christine O’Keefe
    • 8
  • Cathy Pitkin
    • 9
  • Steven Prawer
    • 10
  • Richard Sinnott
    • 11
  • Deborah Warr
    • 12
  • Jenny Waycott
    • 13
  1. 1.Melbourne Law SchoolMelbourneAustralia
  2. 2.School of Mathematical and Geospatial SciencesRMIT UniversityMelbourneAustralia
  3. 3.Department of Geospatial ScienceRMIT UniversityMelbourneAustralia
  4. 4.Faculty of Medicine Dentistry and Health SciencesThe University of MelbourneMelbourneAustralia
  5. 5.Centre for Health EquityMelbourne School of Population and Global HealthParkvilleAustralia
  6. 6.Melbourne School of Population and Global HealthCarltonAustralia
  7. 7.Peter Doherty Institute for Infection and Immunity, The Royal Melbourne Hospital and the Modelling and Simulation Group within the Centre for Epidemiology and BiostatisticsMelbourne School of Population and Global HealthMelbourneAustralia
  8. 8.CSIRO Mathematics, Informatics and StatisticsCommonwealth Scientific and Industrial Research OrganisationActonAustralia
  9. 9.Social Responsibility and Ethics at CSIRO, Commonwealth Scientific and Industrial Research OrganisationActonAustralia
  10. 10.iBIONICSGatineauCanada
  11. 11.Computing and Information Systems DepartmentUniversity of MelbourneMelbourneAustralia
  12. 12.McCaughey Centre, Centre for Health EquityMelbourne School of Population and Global Health, University of MelbourneCarltonAustralia
  13. 13.Department of Computing and Information SystemsUniversity of MelbourneMelbourneAustralia

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