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 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.
KeywordsBioethics Internet research Digital data Data security Data sharing Privacy/confidentiality Research ethics committees Institutional review boards
The authors would like to gratefully acknowledge the Carlton Connect Initiative Fund, University of Melbourne.
- 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.Google Scholar
- Anderson, J. Q., & Raine, L. (2014). The internet of things will thrive by 2025. New York: The Pew Internet Project.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.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, 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.CrossRefGoogle 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.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
- 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
- Culnane, C., Rubinstein, B. I., & Teague, V. (2017). Health Data in an Open World. arXiv preprint arXiv:1712.05627.Google Scholar
- 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.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.
- 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.Google Scholar
- Fry. (2014). Addressing the ethics of health eResearch with human participants. Paper presented at the Towards Unified Global Research, Melbourne.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.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.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.
- Kitchin, R. (2014). The data revolution: Big data, open data, data infrastructures and their consequences. Thousand Oaks: Sage.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).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.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.Google Scholar
- 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
- 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.Google Scholar
- 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.Google Scholar
- 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 ). 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
- 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.CrossRefGoogle 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., & Estrin, D. (2012). Ethical issues in participatory sensing. Ethics CORE. Urbana: National Center for Professional & Research EthicsGoogle 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).Google Scholar
- 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, 358–375Google 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.Google Scholar
- 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.
- 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.Google Scholar
- Voosen, P. (2014). Big data scientists face ethical challenges after Facebook study. The Chronicle of Higher Education.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
- 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.
- Zevenbergen, B. (2016). Networked Systems Ethics—Guidelines.Google Scholar
- 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).Google Scholar