Selected Websites
Privacy & Ethics
Social media platforms provide researchers with a cost-effective way to recruit participants, and enable them to stay connected to people participating in a study. However, recruiting participants and using their data for research purposes is complicated because of ethical issues and questions of confidentiality. As of today, there are no standard practice guidelines to follow when using social media as a research tool. There are several helpful readings and websites, and I have included these on this page. When in doubt, it is always helpful to begin by consulting with staff at Boston University's Institutional Review Board.
For Further Reading
Azer, S. A. (2017). Social media channels in health care research and rising ethical issues. AMA Journal of Ethics, 19(11), 1061-1069. https://journalofethics.2017.19.11.peer1-1711 [pii]
Bhatia-Lin, A., Boon-Dooley, A., Roberts, M. K., Pronai, C., Fisher, D., Parker, L., Engstrom, A., Ingraham, L., & Darnell, D. (2019). Ethical and regulatory considerations for using social media platforms to locate and track research participants. American Journal of Bioethics, 19(6), 47-61. https://10.1080/15265161.2019.1602176
Bour, C., Ahne, A., Schmitz, S., Perchoux, C., Dessenne, C., & Fagherazzi, G. (2021). The Use of social media for health research purposes: scoping review. Journal of Medical Internet Research, 23(5), e25736. https://10.2196/25736
Ford, E., Shepherd, S., Jones, K., & Hassan, L. (2021). Toward an ethical framework for the text mining of social media for health research: a systematic review. Frontiers in Digital Health, 2, 592237.
Hemphill, L., Schöpke-Gonzalez, A., & Panda, A. (2022). Comparative sensitivity of social media data and their acceptable use in research. Scientific Data, 9(1), 643. https://10.1038/s41597-022-01773-w
Lynch, H. F., Largent, E. A., Joffe, S., & DeMichele, A. M. (2018). Protecting clinical trial participants and study integrity in the age of social media. Cancer, 124(24), 4610-4617.
Pagoto, S., & Nebeker, C. (2019). How scientists can take the lead in establishing ethical practices for social media research. Journal of the American Medical Informatics Association : JAMIA, 26(4), 311-313. https://10.1093/jamia/ocy174
Zimmermann, B. M., Willem, T., Bredthauer, C. J., & Buyx, A. (2022). Ethical issues in social media recruitment for clinical studies: ethical analysis and framework. Journal of Medical Internet Research, 24(5), e31231. https://10.2196/31231
