A framework for ethical use of twitter for public health research

Background: Twitter is a popular social networking site with a free advanced programming interface (API) that allows access to millions of tweets, including metadata like a tweet author's exact physical location. The sheer volume and timeliness of this data make it a valuable tool for tracking influenza like illness symptoms, mental health, and more. Researchers using this methodology generally use the data in aggregate, so that no single tweet or user is singled out; however, a user-centric use case is not inconceivable. Although Twitter data is publicly available and is therefore exempt from requiring IRB panel review, it is often detailed enough to identify people in ways that traditional public data sets cannot. Objective: Despite immense interest in using Twitter for research purposes, the ethics around using the service have not yet been thoroughly discussed. The objective of this effort is to discuss the ethical issues around using Twitter data, and to propose a framework for the protection of human subjects while conducting research using that data. Methods: The 2012 Consumer Privacy Bill of Rights “give[s] consumers clear guidance on what they should expect from those who handle their personal information, and set expectations for companies that use personal data.” The CPBoR emphasizes individual control, transparency, respect for context, security, access and accuracy, focused collection, and accountability. These principles were adapted and combined with pre-existing ethical guidelines regarding to develop the proposed framework. Results: Key features of the framework include adhering to expectations for privacy in a public space by using tweet data in aggregate; maintaining the anonymity of source authors; respecting context; and securing and anonymizing data. Discussion: The public health community has not yet adopted a framework for using Twitter data ethically. This effort lays the foundation for that objective.