Digital Trespass: Ethical and Terms-of-Use Violations by Researchers Accessing Data From an Online Patient Community

With the expansion and popularity of research on websites such as Facebook and Twitter, there has been increasing concern about investigator conduct and social media ethics. The availability of large data sets has attracted researchers who are not traditionally associated with health data and its associated ethical considerations, such as computer and data scientists. Reliance on oversight by ethics review boards is inadequate and, due to the public availability of social media data, there is often confusion between public and private spaces. In addition, social media participants and researchers may pay little attention to traditional terms of use. In this paper, we review four cases involving ethical and terms-of-use violations by researchers seeking to conduct social media studies in an online patient research network. These violations involved unauthorized scraping of social media data, entry of false information, misrepresentation of researcher identities of participants on forums, lack of ethical approval and informed consent, use of member quotations, and presentation of findings at conferences and in journals without verifying accurate potential biases and limitations of the data. The correction of these ethical lapses often involves much effort in detecting and responding to violators, addressing these lapses with members of an online community, and correcting inaccuracies in the literature (including retraction of publications and conference presentations). Despite ...
Source: Journal of Medical Internet Research - Category: General Medicine Authors: Source Type: research