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

摘要

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 these corrective actions, we do not regard these episodes solely as violations. Instead, they represent broader ethical issues that may arise from potential sources of confusion, misinformation, inadequacies in applying traditional informed consent procedures to social media research, and differences in ethics training and scientific methodology across research disciplines. Social media research stakeholders need to assure participants that their studies will not compromise anonymity or lead to harmful outcomes while preserving the societal value of their health-related studies. Based on our experience and published recommendations by social media researchers, we offer potential directions for future prevention-oriented measures that can be applied by data producers, computer/data scientists, institutional review boards, research ethics committees, and publishers. Keywords. ethical issues, social media, data sharing, privacy, informed consent, data protection, data anonymizationIntroductionAccording to the Pew Research Center [1], the majority of Americans use social media websites such as Facebook (68%) and YouTube (75%), with roughly a quarter to one-third using other sites such as Snapchat, Instagram, LinkedIn, and Twitter. The sheer volume of data arising has proved to be an inviting target for both social good and ethically questionable practices alike. Social media data have driven important public health research, including monitoring disease outbreaks [2], predicting health risk behaviors [3], accessing hard-to-reach populations [4], health promotion [5], user health-communication patterns [6], and mutual medical data sharing between patients [7]. Some researchers have adopted a more participatory approach by engaging high-risk groups such as drug users to detect trends and encourage harm reduction [8]. The analysis of these data has ushered in a variety of innovative analytic techniques such as natural language processing, network analysis, deep learning, and geolocation to provide further insight into these large datasets [9].With such a rapidly evolving landscape, this area has been no stranger to ethical controversy [10,11]. Ethical questions have arisen in highly publicized cases such as the Facebook social contagion study [12,13], the release of an OKCupid dataset of 70,000 users [14], and most recently, the use of 50 million user profiles on Facebook by Cambridge Analytica during the 2016 US presidential campaign [15]. In each of these cases, large quantities of user profile data compromised user privacy or manipulated users through targeted messaging.Academic reviews suggest that there is “widespread neglect” of ethical considerations by social media researchers [16], such as inadequate informed consent, lack of researcher boundaries, reposting of personally identifiable content, and deliberate misrepresentation or deception [16] [17,18,19]. A recent study found that online searches of verbatim Twitter quotes found in journal articles can be tracked back to individual users 84% of the time [17], despite users’ lack of awareness of this sharing, resistance to being studied, and desire to consent to these practices [18,19]. Some researchers misrepresent themselves or engage in deception to engage with social media participants [20]. Many researchers assume that social media data are in the public domain, obviating the need for consent altogether [21].There may be several reasons for these challenges. First, researchers co