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1. ETHICAL REVIEW BOARDS AND PERVASIVE DATA RESEARCH: GAPS AND OPPORTUNITIES

   https://doi.org/10.5210/spir.v2020i0.11369  

   Zimmer, Michael; Chapman, Edward (October 2020, AoIR Selected Papers of Internet Research)

   null (Ed.)

   The growing prevalence of data-rich networked information technologies—such as social media platforms, smartphones, wearable devices, and the internet of things —brings an increase in the flow of rich, deep, and often identifiable personal information available for researchers. More than just “big data,” these datasets reflect people’s lives and activities, bridge multiple dimensions of a person’s life, and are often collected, aggregated, exchanged, and mined without them knowing. We call this data “pervasive data,” and the increased scale, scope, speed, and depth of pervasive data available to researchers require that we confront the ethical frameworks that guide such research activities. Multiple stakeholders are embroiled in the challenges of research ethics in pervasive data research: researchers struggle with questions of privacy and consent, user communities may not even be aware of the widespread harvesting of their data for scientific study, platforms are increasingly restricting researcher’s access to data over fears of privacy and security, and ethical review boards face increasing difficulties in properly considering the complexities of research protocols relying on user data collected online. The results presented in this paper expand our understanding of how ethical review board members think about pervasive data research. It provides insights into how IRB professionals make decisions about the use of pervasive data in cases not obviously covered by traditional research ethics guidelines, and points to challenges for IRBs when reviewing research protocols relying on pervasive data. 

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2. Measuring Americans’ Comfort With Research Uses of Their Social Media Data

   https://doi.org/10.1177/20563051211033824  

   Gilbert, Sarah; Vitak, Jessica; Shilton, Katie (July 2021, Social Media + Society)

   null (Ed.)

   Research using online datasets from social media platforms continues to grow in prominence, but recent research suggests that platform users are sometimes uncomfortable with the ways their posts and content are used in research studies. While previous research has suggested that a variety of contextual variables may influence this discomfort, such factors have yet to be isolated and compared. In this article, we present results from a factorial vignette survey of American Facebook users. Findings reveal that researcher domain, content type, purpose of data use, and awareness of data collection all impact respondents’ comfort—measured via judgments of acceptability and concern—with diverse data uses. We provide guidance to researchers and ethics review boards about the ways that user reactions to research uses of their data can serve as a cue for identifying sensitive data types and uses. 

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3. Public Concern About Monitoring Twitter Users and Their Conversations to Recruit for Clinical Trials: Survey Study

   https://doi.org/10.2196/15455  

   Reuter, Katja; Zhu, Yifan; Angyan, Praveen; Le, NamQuyen; Merchant, Akil A; Zimmer, Michael (January 2019, Journal of Medical Internet Research)

   Background Social networks such as Twitter offer the clinical research community a novel opportunity for engaging potential study participants based on user activity data. However, the availability of public social media data has led to new ethical challenges about respecting user privacy and the appropriateness of monitoring social media for clinical trial recruitment. Researchers have voiced the need for involving users’ perspectives in the development of ethical norms and regulations. Objective This study examined the attitudes and level of concern among Twitter users and nonusers about using Twitter for monitoring social media users and their conversations to recruit potential clinical trial participants. Methods We used two online methods for recruiting study participants: the open survey was (1) advertised on Twitter between May 23 and June 8, 2017, and (2) deployed on TurkPrime, a crowdsourcing data acquisition platform, between May 23 and June 8, 2017. Eligible participants were adults, 18 years of age or older, who lived in the United States. People with and without Twitter accounts were included in the study. Results While nearly half the respondents—on Twitter (94/603, 15.6%) and on TurkPrime (509/603, 84.4%)—indicated agreement that social media monitoring constitutes a form of eavesdropping that invades their privacy, over one-third disagreed and nearly 1 in 5 had no opinion. A chi-square test revealed a positive relationship between respondents’ general privacy concern and their average concern about Internet research (P<.005). We found associations between respondents’ Twitter literacy and their concerns about the ability for researchers to monitor their Twitter activity for clinical trial recruitment (P=.001) and whether they consider Twitter monitoring for clinical trial recruitment as eavesdropping (P<.001) and an invasion of privacy (P=.003). As Twitter literacy increased, so did people’s concerns about researchers monitoring Twitter activity. Our data support the previously suggested use of the nonexceptionalist methodology for assessing social media in research, insofar as social media-based recruitment does not need to be considered exceptional and, for most, it is considered preferable to traditional in-person interventions at physical clinics. The expressed attitudes were highly contextual, depending on factors such as the type of disease or health topic (eg, HIV/AIDS vs obesity vs smoking), the entity or person monitoring users on Twitter, and the monitored information. Conclusions The data and findings from this study contribute to the critical dialogue with the public about the use of social media in clinical research. The findings suggest that most users do not think that monitoring Twitter for clinical trial recruitment constitutes inappropriate surveillance or a violation of privacy. However, researchers should remain mindful that some participants might find social media monitoring problematic when connected with certain conditions or health topics. Further research should isolate factors that influence the level of concern among social media users across platforms and populations and inform the development of more clear and consistent guidelines. 

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4. Building a Pillowfort: Political Tensions in Platform Design and Policy

   https://doi.org/10.1145/3492835  

   Dym, Brianna; Pasupuleti, Namita; Fiesler, Casey (January 2022, Proceedings of the ACM on Human-Computer Interaction)

   Social media platforms make trade-offs in their design and policy decisions to attract users and stand out from other platforms. These decisions are influenced by a number of considerations, e.g. what kinds of content moderation to deploy or what kinds of resources a platform has access to. Their choices play into broader political tensions; social media platforms are situated within a social context that frames their impact, and they can have politics through their design that enforce power structures and serve existing authorities. We turn to Pillowfort, a small social media platform, to examine these political tensions as a case study. Using a discourse analysis, we examine public discussion posts between staff and users as they negotiate the site's development over a period of two years. Our findings illustrate the tensions in navigating the politics that users bring with them from previous platforms, the difficulty of building a site's unique identity and encouraging commitment, and examples of how design decisions can both foster and break trust with users. Drawing from these findings, we discuss how the success and failure of new social media platforms are impacted by political influences on design and policy decisions. 

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5. Content Moderation Folk Theories And Perceptions of Platform Spirit Among Marginalized Social Media Users

   https://doi.org/10.1145/3632741  

   Mayworm, Samuel; DeVito, Michael Ann; Delmonaco, Dan; Thach, Hibby; Haimson, Oliver L. (December 2023, ACM Transactions on Social Computing)

   Social media users create folk theories to help explain how elements of social media operate. Marginalized social media users face disproportionate content moderation and removal on social media platforms. We conducted a qualitative interview study (n = 24) to understand how marginalized social media users may create folk theories in response to content moderation and their perceptions of platforms’ spirit, and how these theories may relate to their marginalized identities. We found that marginalized social media users develop folk theories informed by their perceptions of platforms’ spirit to explain instances where their content was moderated in ways that violate their perceptions of how content moderation should work in practice. These folk theories typically address content being removed despite not violating community guidelines, along with bias against marginalized users embedded in guidelines. We provide implications for platforms, such as using marginalized users’ folk theories as tools to identify elements of platform moderation systems that function incorrectly and disproportionately impact marginalized users. 

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