Ethical research standards in a world of big data

Abstract

<ns4:p> In 2009 Ginsberg <ns4:italic>et al.</ns4:italic> reported using Google search query volume to estimate influenza activity in advance of traditional methodologies. It was a groundbreaking example of digital disease detection, and it still remains illustrative of the power of gathering data from the internet for important research. In recent years, the methodologies have been extended to include new topics and data sources; Twitter in particular has been used for surveillance of influenza-like-illnesses, political sentiments, and even behavioral risk factors like sentiments about childhood vaccination programs. As the research landscape continuously changes, the protection of human subjects in online research needs to keep pace. Here we propose a number of guidelines for ensuring that the work done by digital researchers is supported by ethical-use principles. Our proposed guidelines include: 1) Study designs using Twitter-derived data should be transparent and readily available to the public. 2) The context in which a tweet is sent should be respected by researchers. 3) All data that could be used to identify tweet authors, including geolocations, should be secured. 4) No information collected from Twitter should be used to procure more data about tweet authors from other sources. 5) Study designs that require data collection from a few individuals rather than aggregate analysis require Institutional Review Board (IRB) approval. 6) Researchers should adhere to a user’s attempt to control his or her data by respecting privacy settings. As researchers, we believe that a discourse within the research community is needed to ensure protection of research subjects. These guidelines are offered to help start this discourse and to lay the foundations for the ethical use of Twitter data. </ns4:p>