Skip to main content

Advertisement

Log in

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

  • Original Paper
  • Published:
Ethics and Information Technology Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Notes

  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. 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. 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.

References

  • ALLEA Permanent Working Group on Science and Ethics. (2011) (Revised 2017). The European Code of Conduct for Research Integrity. Berlin: ALLEA—All European Academies. Retrieved from https://ec.europa.eu/research/participants/data/ref/h2020/other/hi/h2020-ethics_code-of-conduct_en.pdf.

  • Andalibi, N., Haimson, O. L., De Choudhury, M., & Forte, A. (2016). Understanding Social Media Disclosures of Sexual Abuse Through the Lenses of Support Seeking and Anonymity. Paper presented at the Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems.

  • Anderson, J. Q., & Raine, L. (2014). The internet of things will thrive by 2025. New York: The Pew Internet Project.

    Google Scholar 

  • Anderson, J. E., & Sieber, J. E. (2009). The need for evidence-based research ethics. The American Journal of Bioethics, 9(11), 60–62.

    Article  Google Scholar 

  • Barker, A., & Powell, R. A. (1997). Authorship. Guidelines exist on ownership of data and authorship in multicentre collaborations. BMJ: British Medical Journal, 314(7086), 1046.

    Article  Google Scholar 

  • Barsh, G. S., Cooper, G. M., Copenhaver, G. P., Gibson, G., McCarthy, M. I., Tang, H., & Williams, S. M. (2015). PLOS genetics data sharing policy: In pursuit of functional utility. PLoS Genetics, 11(12), e1005716.

    Article  Google Scholar 

  • Bates, J. (2012). “This is what modern deregulation looks like”: Co-optation and contestation in the shaping of the UK’s open government data initiative. The Journal of Community Informatics, 8(2), 1–20.

    MathSciNet  Google Scholar 

  • Beddows, E. (2008). The methodological issues associated with internet-based research. International Journal of Emerging Technologies and Society, 6(2), 124–139.

    Google Scholar 

  • Borgman, C. L. (2012). The conundrum of sharing research data. Journal of the American Society for Information Science and Technology, 63(6), 1059–1078.

    Article  Google Scholar 

  • Borgman, C, Wallis, J. C., & Enyedy, N. (2006). Building digital libraries for scientific data: An exploratory study of data practices in habitat ecology. In S. Kapidakis, C. Mazurek, & M. Werla (Eds.) Research and advanced technology for digital libraries (pp. 170–183). Berlin: Springer.

    Chapter  Google Scholar 

  • Boyd, D. (2016). Untangling research and practice: What Facebook’s “emotional contagion” study teaches us. Research Ethics, 12(1), 4–13.

    Article  Google Scholar 

  • Boyd, D., & Crawford, K. (2012). Critical questions for big data: Provocations for a cultural, technological, and scholarly phenomenon. Information, Communication & Society, 15(5), 662–679.

    Article  Google Scholar 

  • Brown, B., Weilenmann, A., McMillan, D., & Lampinen, A. (2016). Five Provocations for Ethical HCI Research. Paper presented at the Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems.

  • Bruckman, A. (2014). Research ethics and HCI ways of knowing in HCI (pp. 449–468). Berlin: Springer.

    Book  Google Scholar 

  • Buchanan, E. A. (2004). Readings in virtual research ethics: Issues and controversies. Hershey: IGI Global.

    Book  Google Scholar 

  • Buchanan, E. A. (2011). Internet research ethics: Past, present, and future. In: M. Consalvo & Ch. Ess (Eds.) The handbook of internet studies (pp. 83–108). Chichester: Wiley

    Chapter  Google Scholar 

  • Buchanan E.A., & Ess, C. M. (2009). Internet research ethics and the institutional review board: Current practices and issues. ACM SIGCAS Computers and Society, 39(3), 43–49.

    Article  Google Scholar 

  • Buchanan, E., & Hvizdak, E. E. (2009). Online survey tools: Ethical and methodological concerns of human research ethics committees. Journal of Empirical Research on Human Research Ethics, 4(2), 37–48

    Article  Google Scholar 

  • Buchanan, E., Aycock, J., Dexter, S., Dittrich, D., & Hvizdak, E. (2011). Computer science security research and human subjects: Emerging considerations for research ethics boards. Journal of Empirical Research on Human Research Ethics, 6(2), 71–83

    Article  Google Scholar 

  • Burton, P. R., Murtagh, M. J., Boyd, A., Williams, J. B., Dove, E. S., Wallace, S. E., Tassé, A., et al. (2015). Data safe havens in health research and healthcare. Bioinformatics, 31, 3241–3248.

    Article  Google Scholar 

  • Calear, A. L., & Christensen, H. (2010). Review of internet-based prevention and treatment programs for anxiety and depression in children and adolescents. Medical Journal of Australia, 192(11), S12.

    Google Scholar 

  • Chang, R. L., & Gray, K. (2013). Ethics of research into learning and teaching with Web 2.0: Reflections on eight case studies. Journal of Computing in Higher Education, 25(3), 147–165.

    Article  Google Scholar 

  • Christensen, H., Griffiths, K. M., & Jorm, A. F. (2004). Delivering interventions for depression by using the internet: Randomised controlled trial. BMJ, 328(7434), 265.

    Article  Google Scholar 

  • Clark, K., Duckham, M., Guillemin, M., Hunter, A., McVernon, J., O’Keefe, C., et al. (2015). Guidelines for the Ethical Use of Digital Data in Human Research. Retrieved from http://www.carltonconnect.com.au.

  • Convery, I., & Cox, D. (2012). A review of research ethics in internet-based research. Practitioner Research in Higher Education, 6(1), 50–57.

    Google Scholar 

  • Conway, M. (2014). Ethical issues in using Twitter for public health surveillance and research: Developing a taxonomy of ethical concepts from the research literature. Journal of medical Internet research, 16(12), e290.

    Article  Google Scholar 

  • Cragin, M. H., Palmer, C. L., Carlson, J. R., & Witt, M. (2010). Data sharing, small science and institutional repositories. Philosophical Transactions of the Royal Society A: Mathematical, Physical and Engineering Sciences, 368(1926), 4023–4038.

    Article  Google Scholar 

  • Culnane, C., Rubinstein, B. I., & Teague, V. (2017). Health Data in an Open World. arXiv preprint arXiv:1712.05627.

  • Daly, J. (1996). Ethical intersections: Health research, methods and researcher responsibility. Boulder: Westview Press.

    Google Scholar 

  • De Choudhury, M., Counts, S., & Horvitz, E. (2013). Predicting postpartum changes in emotion and behavior via social media. Paper presented at the Proceedings of the SIGCHI Conference on Human Factors in Computing Systems.

  • Duckham, M., & Kulik, L. (2005). A formal model of obfuscation and negotiation for location privacy. In H. W. Gellersen, R. Want, A. Schmidt (Eds.) Pervasive computing (pp. 152–170). Berlin: Springer.

    Chapter  Google Scholar 

  • Duckham, M., & Kulik, L. (2006). Location privacy and location-aware computing. Dynamic & Mobile GIS: Investigating Change in Space and Time, 3, 35–51.

    Google Scholar 

  • Ess, C. & AoIR Ethics Working Committee. (2002). Ethical decision-making and Internet research: Recommendations from the AoIR Ethics Working Committee. Retrieved from http://www.aoir.org/reports/ethics.pdf.

  • Fisher, J. B., & Fortmann, L. (2010). Governing the data commons: Policy, practice, and the advancement of science. Information & management, 47(4), 237–245.

    Article  Google Scholar 

  • Fry. (2013). Researcher and HREC attitudes about the ethics of e-research in Australia. Paper presented at the Emerging issues, controversies and innovating for change., Freemantle.

  • Fry. (2014). Addressing the ethics of health eResearch with human participants. Paper presented at the Towards Unified Global Research, Melbourne.

  • Fry, C., Spriggs, M., Arnold, M., & Pearce, C. (2014). Unresolved Ethical Challenges for the Australian Personally Controlled Electronic Health Record (PCEHR) System: Key Informant Interview Findings. AJOB Empirical Bioethics, 5(4), 30–36.

    Article  Google Scholar 

  • Geissbuhler, A., Safran, C., Buchan, I., Bellazzi, R., Labkoff, S., Eilenberg, K., et al. (2013). Trustworthy reuse of health data: A transnational perspective. International journal of medical informatics, 82(1), 1–9.

    Article  Google Scholar 

  • Gleibs, I. (2014). Turning virtual public spaces into laboratories: Thoughts on conducting online field studies using social network sites. Analyses of Social Issues and Public Policy.

  • Griffiths, K. M., & Christensen, H. (2007). Internet-based mental health programs: A powerful tool in the rural medical kit. Australian Journal of Rural Health, 15(2), 81–87.

    Article  Google Scholar 

  • Gustafson, D. L., & Woodworth, C. F. (2014). Methodological and ethical issues in research using social media: A metamethod of Human Papillomavirus vaccine studies. BMC Medical Research Methodology, 14(1), 1.

    Article  Google Scholar 

  • Gymrek, M., McGuire, A. L., Golan, D., Halperin, E., & Erlich, Y. (2013). Identifying personal genomes by surname inference. Science, 339(6117), 321–324.

    Article  Google Scholar 

  • Hargittai, E. (2015). Is bigger always better? Potential biases of big data derived from social network sites. The ANNALS of the American Academy of Political and Social Science, 659(1), 63–76.

    Article  Google Scholar 

  • Harriman, S., & Patel, J. (2014). The ethics and editorial challenges of internet-based research. BMC Medicine, 12(1), 124.

    Article  Google Scholar 

  • Harvey, F. (2013). To volunteer or to contribute locational information? Towards truth in labeling for crowdsourced geographic information. In D. Sui, S. Elwood, M. Goodchild (Eds.) Crowdsourcing geographic knowledge (pp. 31–42): Berlin: Springer.

    Chapter  Google Scholar 

  • Henderson, T., Hutton, L., & McNeilly, S. (2012). Ethics and online social network research–developing best practices. Paper presented at the Proceedings of Proceedings of the 26th BCS Conference on Human Computer Interaction.

  • Hine, C. (2005). Internet research and the sociology of cyber-social-scientific knowledge. The Information Society, 21(4), 239–248.

    Article  Google Scholar 

  • Holman, C. D. A. J., Bass, J. A., Rosman, D. L., Smith, M. B., Semmens, J. B., Glasson, E. J., et al. (2008). A decade of data linkage in Western Australia: Strategic design, applications and benefits of the WA data linkage system. Australian Health Review, 32(4), 766–777.

    Article  Google Scholar 

  • Homer, N., Szelinger, S., Redman, M., Duggan, D., Tembe, W., Muehling, J., et al. (2008). Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays. PLoS Genetics 4(8), e1000167.

    Article  Google Scholar 

  • Hoser, B., & Nitschke, T. (2010). Questions on ethics for research in the virtually connected world. Social Networks, 32(3), 180–186.

    Article  Google Scholar 

  • http://www.hhs.gov/ohrp/sachrp/commsecbytopic/index.html.

  • Iversen, A., Liddell, K., Fear, N., Hotopf, M., & Wessely, S. (2006). Consent, confidentiality, and the data protection act. BMJ, 332(7534), 165–169.

    Article  Google Scholar 

  • Jones, C. (2011). Ethical issues in online research. Retrieved from https://www.bera.ac.uk/wp-content/uploads/2014/03/Ethical-issues-in-online-research.pdf.

  • Jouhki, J., Lauk, E., Penttinen, M., Sormanen, N., & Uskali, T. (2016). Facebook’s emotional contagion experiment as a challenge to research ethics. Media and Communication. 4, 75–85

    Article  Google Scholar 

  • Kahn, J. P., Vayena, E., & Mastroianni, A. C. (2014). Opinion: Learning as we go: Lessons from the publication of Facebook’s social-computing research. Proceedings of the National Academy of Sciences USA, 111(38), 13677–13679.

    Article  Google Scholar 

  • Kanuka, H., & Anderson, T. (2008). Ethical issues in qualitative e-learning research. International Journal of Qualitative Methods, 6(2), 20–39.

    Article  Google Scholar 

  • Kaye, J. (2012). The tension between data sharing and the protection of privacy in genomics research. Annual Review of Genomics and Human Genetics, 13, 415.

    Article  Google Scholar 

  • Kaye, J., Whitley, E. A., Lund, D., Morrison, M., Teare, H., & Melham, K. (2015). Dynamic consent: A patient interface for twenty-first century research networks. European Journal of Human Genetics, 23(2), 141.

    Article  Google Scholar 

  • Keim-Malpass, J., Steeves, R., & Kennedy, C. (2014). Internet ethnography: A review of methodological considerations for studying online illness blogs. International Journal of Nursing Studies, 51(12), 1686–1692.

    Article  Google Scholar 

  • Khatri, V., & Brown, C. V. (2010). Designing data governance. Communications of the ACM, 53(1), 148–152.

    Article  Google Scholar 

  • Kitchin, R. (2014). The data revolution: Big data, open data, data infrastructures and their consequences. Thousand Oaks: Sage.

    Google Scholar 

  • Knoppers, B. M. (2014). Framework for responsible sharing of genomic and health-related data. The HUGO Journal, 8(1), 1.

    Article  Google Scholar 

  • Knoppers, B. M., Harris, J. R., Tassé, A. M., Budin-Ljøsne, I., Kaye, J., Deschênes, M., & Ma’n, H. (2011). Towards a data sharing Code of Conduct for international genomic research. Genome Medicine, 3(7), 46.

    Article  Google Scholar 

  • Koene, A., Perez, E., Carter, C. J., Statache, R., Adolphs, S., O’Malley, C., et al. (2015). Research ethics and public trust, preconditions for continued growth of internet mediated research. Paper presented at the 1st International Conference on Information System Security and Privacy (ICISSP).

  • Kramer, A. D., Guillory, J. E., & Hancock, J. T. (2014). Experimental evidence of massive-scale emotional contagion through social networks. Proceedings of the National Academy of Sciences USA, 111, 8788–8790.

    Article  Google Scholar 

  • Kramer, A. D., Guillory, J. E., & Hancock, J. T. (2014b). Experimental evidence of massive-scale emotional contagion through social networks (Verma. IM. Editorial Expression of Concern and Correction). Proceedings of the National Academy of Sciences USA, 111, 10779.

    Article  Google Scholar 

  • Kraut, R., Olson, J., Banaji, M., Bruckman, A., Cohen, J., & Couper, M. (2004). Psychological research online: Report of Board of Scientific Affairs’ Advisory Group on the Conduct of Research on the Internet. American Psychologist, 59(2), 105.

    Article  Google Scholar 

  • Lane, J., & Schur, C. (2010). Balancing access to health data and privacy: A review of the issues and approaches for the future. Health Services Research, 45(5p2), 1456–1467.

    Article  Google Scholar 

  • Lee, L. M., & Gostin, L. O. (2009). Ethical collection, storage, and use of public health data: A proposal for a national privacy protection. JAMA, 302(1), 82–84.

    Article  Google Scholar 

  • Liu, L., Huh, J., Neogi, T., Inkpen, K., & Pratt, W. (2013). Health vlogger-viewer interaction in chronic illness management, Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (pp. 49–58). ACM Press.

  • Lunnay, B., Borlagdan, J., McNaughton, D., & Ward, P. (2014). Ethical use of social media to facilitate qualitative research. Qualitative Health Research. https://doi.org/10.1177/1049732314549031.

    Article  Google Scholar 

  • Malin, B. A., El Emam, K., & O’Keefe, C. M. (2013). Biomedical data privacy: Problems, perspectives, and recent advances. Journal of the American Medical Informatics Association, 20(1), 2–6.

    Article  Google Scholar 

  • Markham, A., & Buchanan, E. (2012). Ethical Decision-Making and Internet Research Recommendations from the AoIR Ethics Working Committee (Version 2.0). Retrieved from http://aoir.org/reports/ethics2.pdf, Association of Internet Researchers website.

  • Markham, A., Buchanan, E., & Committee, A. E. W. (2012). Ethical decision-making and Internet research: Version 2.0. Association of Internet Researchers.

  • Mayer-Schönberger, V., & Cukier, K. (2013). Big data: A revolution that will transform how we live, work, and think. Boston: Houghton Mifflin Harcourt.

    Google Scholar 

  • McKee, R. (2013). Ethical issues in using social media for health and health care research. Health Policy, 110(2), 298–301.

    Article  Google Scholar 

  • McMillan, D., Morrison, A., & Chalmers, M. (2013). Categorised ethical guidelines for large scale mobile HCI. Paper presented at the Proceedings of the SIGCHI Conference on Human Factors in Computing Systems.

  • Metcalf, J., & Crawford, K. (2016). Where are Human Subjects in Big Data Research? The Emerging Ethics Divide. The Emerging Ethics Divide (May 14, 2016). Big Data and Society, Spring.

  • National Health and Medical Research Council. (2015). Guidelines Under Sect. 95 of the Privacy Act (1988). Retrieved from https://www.nhmrc.gov.au/guidelines-publications/e72.

  • National Research Council. (2009). Ensuring the integrity, accessibility, and stewardship of research data in the digital age. Washington, D.C.: National Research Council.

    Google Scholar 

  • NHMRC. (2012). Ethical Issues in Research into Alcohol and Other Drugs: an issues Paper Exploring the Need for a Guidance Framework. Retrieved from https://www.nhmrc.gov.au/guidelines/publications/ds12.

  • NHMRC. (2007 [2014]). National Statement on Ethical Conduct in Human Research. https://www.nhmrc.gov.au/book/national-statement-ethical-conduct-human-research.

  • Nissenbaum, H. (2009). Privacy in context: Technology, policy, and the integrity of social life. Palo Alto: Stanford University Press.

    Google Scholar 

  • O’Keefe, C. M., & Connolly, C. (2011). Regulation and perception concerning the use of health data for research in Australia. Electronic Journal of Health Informatics. 6(2), e16.

    Google Scholar 

  • O’Keefe, C. M., & Connolly, C. J. (2010). Privacy and the use of health data for research. Medical Journal of Australia, 193(9), 537–541.

    Google Scholar 

  • O’Keefe, C. M., & Rubin, D. B. (2015). Individual privacy versus public good: Protecting confidentiality in health research. Statistics in Medicine, 34(23), 3081–3103.

    Article  MathSciNet  Google Scholar 

  • Onsrud, H. J. (1995). Identifying unethical conduct in the use of GIS. Cartography and Geographic Information Systems, 22(1), 90–97.

    Article  Google Scholar 

  • Rosenbaum, S. (2010). Data governance and stewardship: Designing data stewardship entities and advancing data access. Health Services Research, 45(5p2), 1442–1455.

    Article  Google Scholar 

  • Safran, C., Bloomrosen, M., Hammond, W. E., Labkoff, S., Markel-Fox, S., Tang, P. C., & Detmer, D. E. (2007). Toward a national framework for the secondary use of health data: An American Medical Informatics Association White Paper. Journal of the American Medical Informatics Association, 14(1), 1–9.

    Article  Google Scholar 

  • Secretary’s Advisory Committee on Human Research Protections (SACHRP). (2013). Considerations and recommendations concerning internet research and human subjects research regulations (Recommendations for Research with the Internet). Washington D.C.: US Government. Retrieved from http://www.hhs.gov/ohrp/sachrp/index.html.

  • Selinger, E., & Hartzog, W. (2015). Facebook’s emotional contagion study and the ethical problem of co-opted identity in mediated environments where users lack control. Research Ethics, 12, 35–43.

    Google Scholar 

  • Shilton, K. (2009). Four billion little brothers? Privacy, mobile phones, and ubiquitous data collection. Communications of the ACM, 52(11), 48–53.

    Article  Google Scholar 

  • Shilton, K. (2010). Participatory sensing: Building empowering surveillance. Surveillance & Society, 8(2), 131–150.

    Article  Google Scholar 

  • Shilton, K., & Estrin, D. (2012). Ethical issues in participatory sensing. Ethics CORE. Urbana: National Center for Professional & Research Ethics

    Google Scholar 

  • Shilton, K., & Sayles, S. (2016). "We Aren’t All Going to Be on the Same Page about Ethics”: Ethical Practices and Challenges in Research on Digital and Social Media. Paper presented at the 2016 49th Hawaii International Conference on System Sciences (HICSS).

  • Sinnott, R., Bayliss, C., Bromage, A., Galang, G., Grazioli, G., Greenwood, P., et al. (2014). The Australia urban research gateway. Concurrency and Computation: Practice and Experience, 27, 358–375

    Google Scholar 

  • Sinnott, R., Chhetri, P., Gong, Y., Macaulay, A., & Voorsluys, W. (2015). Privacy-preserving Data Linkage through Blind Geo-spatial Data Aggregation. Paper presented at the IEEE International Symposium on Big Data Security on Cloud (BigDataSecurity 2015), New York.

  • The National Committee for Research Ethics in the Social Sciences and the Humanities. (2014). Ethical Guidelines for Internet Research. Retrieved from https://www.etikkom.no/en/ethical-guidelines-for-research/ethical-guidelines-for-internet-research/.

  • Utrecht Data School. (2018). Data Ethics Decision Aid, from https://dataschool.nl/deda/deda-for-research/?lang=en.

  • Vayena, E., Salathé, M., Madoff, L. C., Brownstein, J. S., & Bourne, P. E. (2015). Ethical challenges of big data in public health. PLoS Computational Biology, 11(2), e1003904.

    Article  Google Scholar 

  • Vayena, E., & Tasioulas, J. (2013). Adapting standards: Ethical oversight of participant-led health research. PLoS Medicine, 10(3), e1001402.

    Article  Google Scholar 

  • Vitak, J., Blasiola, S., Patil, S., & Litt, E. (2015). Balancing audience and privacy tensions on social network sites: Strategies of highly engaged users. International Journal of Communication, 9, 20.

    Google Scholar 

  • Vitak, J., Shilton, K., & Ashktorab, Z. (2016). Beyond the Belmont Principles: Ethical challenges, practices, and beliefs in the online data research community. Paper presented at the Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing.

  • Voosen, P. (2014). Big data scientists face ethical challenges after Facebook study. The Chronicle of Higher Education.

  • Wallis, J. C., & Borgman, C. L. (2011). Who is responsible for data? An exploratory study of data authorship, ownership, and responsibility. Proceedings of the American Society for Information Science and Technology, 48(1), 1–10.

    Article  Google Scholar 

  • Walport, M., & Brest, P. (2011). Sharing research data to improve public health. The Lancet, 377(9765), 537–539.

    Article  Google Scholar 

  • Warrell, J. G., & Jacobsen, M. (2014). Internet research ethics and the policy gap for ethical practice in online research settings. The Canadian Journal of Higher Education, 44(1), 22.

    Google Scholar 

  • Waycott, J., Guillemin, M., Warr, D. J., Cox, S., Drew, S., & Howell, C. (2015). Re/formulating ethical issues for visual research methods. Visual Methodologies, 3(2), 4–15.

    Google Scholar 

  • Weitzner, D. J., Abelson, H., Berners-Lee, T., Feigenbaum, J., Hendler, J., & Sussman, G. J. (2008). Information accountability. Communications of the ACM, 51(6), 82–87.

    Article  Google Scholar 

  • Wellcome Trust. (2011). Sharing research data to improve public health: Full joint statement by funders of health research Retrieved from Welcome Trust website: http://www.wellcome.ac.uk/stellent/groups/corporatesite/@msh_peda/documents/web_document/wtvm049648.pdf.

  • Whitehead, L. C. (2007). Methodological and ethical issues in Internet-mediated research in the field of health: An integrated review of the literature. Social Science & Medicine, 65(4), 782–791.

    Article  Google Scholar 

  • Zevenbergen, B. (2016). Networked Systems Ethics—Guidelines.

  • Zevenbergen, B., Mittelstadt, B., Véliz, C., Detweiler, C., Cath, C., Savulescu, J., & Whittaker, M. (2015). Philosophy meets Internet Engineering: Ethics in Networked Systems Research. (GTC workshop outcomes paper).

  • Zimmer, M. (2010). “But the data is already public”: On the ethics of research in Facebook. Ethics and information technology, 12(4), 313–325.

    Article  Google Scholar 

  • Zimmer, M. (2018). Addressing Conceptual Gaps in Big Data Research Ethics: An Application of Contextual Integrity. Social Media + Society, 4(2), 2056305118768300.

    Article  Google Scholar 

Download references

Acknowledgements

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

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Assunta Hunter.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

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

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10676-018-9490-4

Keywords

Navigation