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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When research is the context: Cross-platform user expectations for social media data reuse
Social media provides unique opportunities for researchers to learn about a variety of phenomena—it is often publicly available, highly accessible, and affords more naturalistic observation. However, as research using social media data has increased, so too has public scrutiny, highlighting the need to develop ethical approaches to social media data use. Prior work in this area has explored users’ perceptions of researchers’ use of social media data in the context of a single platform. In this paper, we expand on that work, exploring how platforms and their affordances impact how users feel about social media data reuse. We present results from three factorial vignette surveys, each focusing on a different platform—dating apps, Instagram, and Reddit—to assess users’ comfort with research data use scenarios across a variety of contexts. Although our results highlight different expectations between platforms depending on the research domain, purpose of research, and content collected, we find that the factor with the greatest impact across all platforms is consent—a finding which presents challenges for big data researchers. We conclude by offering a sociotechnical approach to ethical decision-making. This approach provides recommendations on how researchers can interpret and respond to platform norms and affordances to predict potential data use sensitivities. The approach also recommends that researchers respond to the predominant expectation of notification and consent for research participation by bolstering awareness of data collection on digital platforms.
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- Award ID(s):
- 1704369
- NSF-PAR ID:
- 10463680
- Date Published:
- Journal Name:
- Big Data & Society
- Volume:
- 10
- Issue:
- 1
- ISSN:
- 2053-9517
- Page Range / eLocation ID:
- 205395172311641
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
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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.more » « less
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Introduction Social media has created opportunities for children to gather social support online (Blackwell et al., 2016; Gonzales, 2017; Jackson, Bailey, & Foucault Welles, 2018; Khasawneh, Rogers, Bertrand, Madathil, & Gramopadhye, 2019; Ponathil, Agnisarman, Khasawneh, Narasimha, & Madathil, 2017). However, social media also has the potential to expose children and adolescents to undesirable behaviors. Research showed that social media can be used to harass, discriminate (Fritz & Gonzales, 2018), dox (Wood, Rose, & Thompson, 2018), and socially disenfranchise children (Page, Wisniewski, Knijnenburg, & Namara, 2018). Other research proposes that social media use might be correlated to the significant increase in suicide rates and depressive symptoms among children and adolescents in the past ten years (Mitchell, Wells, Priebe, & Ybarra, 2014). Evidence based research suggests that suicidal and unwanted behaviors can be promulgated through social contagion effects, which model, normalize, and reinforce self-harming behavior (Hilton, 2017). These harmful behaviors and social contagion effects may occur more frequently through repetitive exposure and modelling via social media, especially when such content goes “viral” (Hilton, 2017). One example of viral self-harming behavior that has generated significant media attention is the Blue Whale Challenge (BWC). The hearsay about this challenge is that individuals at all ages are persuaded to participate in self-harm and eventually kill themselves (Mukhra, Baryah, Krishan, & Kanchan, 2017). Research is needed specifically concerning BWC ethical concerns, the effects the game may have on teenagers, and potential governmental interventions. To address this gap in the literature, the current study uses qualitative and content analysis research techniques to illustrate the risk of self-harm and suicide contagion through the portrayal of BWC on YouTube and Twitter Posts. The purpose of this study is to analyze the portrayal of BWC on YouTube and Twitter in order to identify the themes that are presented on YouTube and Twitter posts that share and discuss BWC. In addition, we want to explore to what extent are YouTube videos compliant with safe and effective suicide messaging guidelines proposed by the Suicide Prevention Resource Center (SPRC). Method Two social media websites were used to gather the data: 60 videos and 1,112 comments from YouTube and 150 posts from Twitter. The common themes of the YouTube videos, comments on those videos, and the Twitter posts were identified using grounded, thematic content analysis on the collected data (Padgett, 2001). Three codebooks were built, one for each type of data. The data for each site were analyzed, and the common themes were identified. A deductive coding analysis was conducted on the YouTube videos based on the nine SPRC safe and effective messaging guidelines (Suicide Prevention Resource Center, 2006). The analysis explored the number of videos that violated these guidelines and which guidelines were violated the most. The inter-rater reliabilities between the coders ranged from 0.61 – 0.81 based on Cohen’s kappa. Then the coders conducted consensus coding. Results & Findings Three common themes were identified among all the posts in the three social media platforms included in this study. The first theme included posts where social media users were trying to raise awareness and warning parents about this dangerous phenomenon in order to reduce the risk of any potential participation in BWC. This was the most common theme in the videos and posts. Additionally, the posts claimed that there are more than 100 people who have played BWC worldwide and provided detailed description of what each individual did while playing the game. These videos also described the tasks and different names of the game. Only few videos provided recommendations to teenagers who might be playing or thinking of playing the game and fewer videos mentioned that the provided statistics were not confirmed by reliable sources. The second theme included posts of people that either criticized the teenagers who participated in BWC or made fun of them for a couple of reasons: they agreed with the purpose of BWC of “cleaning the society of people with mental issues,” or they misunderstood why teenagers participate in these kind of challenges, such as thinking they mainly participate due to peer pressure or to “show off”. The last theme we identified was that most of these users tend to speak in detail about someone who already participated in BWC. These videos and posts provided information about their demographics and interviews with their parents or acquaintances, who also provide more details about the participant’s personal life. The evaluation of the videos based on the SPRC safe messaging guidelines showed that 37% of the YouTube videos met fewer than 3 of the 9 safe messaging guidelines. Around 50% of them met only 4 to 6 of the guidelines, while the remaining 13% met 7 or more of the guidelines. Discussion This study is the first to systematically investigate the quality, portrayal, and reach of BWC on social media. Based on our findings from the emerging themes and the evaluation of the SPRC safe messaging guidelines we suggest that these videos could contribute to the spread of these deadly challenges (or suicide in general since the game might be a hoax) instead of raising awareness. Our suggestion is parallel with similar studies conducted on the portrait of suicide in traditional media (Fekete & Macsai, 1990; Fekete & Schmidtke, 1995). Most posts on social media romanticized people who have died by following this challenge, and younger vulnerable teens may see the victims as role models, leading them to end their lives in the same way (Fekete & Schmidtke, 1995). The videos presented statistics about the number of suicides believed to be related to this challenge in a way that made suicide seem common (Cialdini, 2003). In addition, the videos presented extensive personal information about the people who have died by suicide while playing the BWC. These videos also provided detailed descriptions of the final task, including pictures of self-harm, material that may encourage vulnerable teens to consider ending their lives and provide them with methods on how to do so (Fekete & Macsai, 1990). 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Abstract Social media data offer a rich resource for researchers interested in public health, labor economics, politics, social behaviors, and other topics. However, scale and anonymity mean that researchers often cannot directly get permission from users to collect and analyze their social media data. This article applies the basic ethical principle of respect for persons to consider individuals’ perceptions of acceptable uses of data. We compare individuals’ perceptions of acceptable uses of other types of sensitive data, such as health records and individual identifiers, with their perceptions of acceptable uses of social media data. Our survey of 1018 people shows that individuals think of their social media data as moderately sensitive and agree that it should be protected. Respondents are generally okay with researchers using their data in social research but prefer that researchers clearly articulate benefits and seek explicit consent before conducting research. We argue that researchers must ensure that their research provides social benefits worthy of individual risks and that they must address those risks throughout the research process.
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Accepted Manuscript1.0
- Journal Article:
- https://doi.org/10.1177/20539517231164108
