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Title: Privacy concerns with using public data for suicide risk prediction algorithms: a public opinion survey of contextual appropriateness
Purpose Existing algorithms for predicting suicide risk rely solely on data from electronic health records, but such models could be improved through the incorporation of publicly available socioeconomic data – such as financial, legal, life event and sociodemographic data. The purpose of this study is to understand the complex ethical and privacy implications of incorporating sociodemographic data within the health context. This paper presents results from a survey exploring what the general public’s knowledge and concerns are about such publicly available data and the appropriateness of using it in suicide risk prediction algorithms. Design/methodology/approach A survey was developed to measure public opinion about privacy concerns with using socioeconomic data across different contexts. This paper presented respondents with multiple vignettes that described scenarios situated in medical, private business and social media contexts, and asked participants to rate their level of concern over the context and what factor contributed most to their level of concern. Specific to suicide prediction, this paper presented respondents with various data attributes that could potentially be used in the context of a suicide risk algorithm and asked participants to rate how concerned they would be if each attribute was used for this purpose. Findings The authors found considerable concern across the various contexts represented in their vignettes, with greatest concern in vignettes that focused on the use of personal information within the medical context. Specific to the question of incorporating socioeconomic data within suicide risk prediction models, the results of this study show a clear concern from all participants in data attributes related to income, crime and court records, and assets. Data about one’s household were also particularly concerns for the respondents, suggesting that even if one might be comfortable with their own being used for risk modeling, data about other household members is more problematic. Originality/value Previous studies on the privacy concerns that arise when integrating data pertaining to various contexts of people’s lives into algorithmic and related computational models have approached these questions from individual contexts. This study differs in that it captured the variation in privacy concerns across multiple contexts. Also, this study specifically assessed the ethical concerns related to a suicide prediction model and determining people’s awareness of the publicness of select data attributes, as well as which of these data attributes generated the most concern in such a context. To the best of the authors’ knowledge, this is the first study to pursue this question.  more » « less
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Date Published:
Journal Name:
Journal of Information, Communication and Ethics in Society
Page Range / eLocation ID:
257 to 272
Medium: X
Sponsoring Org:
National Science Foundation
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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. 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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. 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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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    Although research shows that the Covid-19 pandemic has led to declines in mental health, the existing research has not identified the pathways through which this decline happens.


    The current study identifies the distinct pathways through which COVID-induced stressors (i.e., social distancing, disease risk, and financial stressors) trigger mental distress and examines the causal impact of these stressors on mental distress.


    We combined evidence of objective pandemic-related stressors collected at the county level (e.g., lack of social contact, infection rates, and unemployment rates) with self-reported survey data from over 11.5 million adult respondents in the United States collected daily for eight months. We used mediation analysis to examine the extent to which the objective stressors influenced mental health by influencing individual respondents’ behavior and fears.


    County-level, day-to-day social distancing predicted significantly greater mental distress, both directly and indirectly through its effects on individual social contacts, worries about getting ill, and concerns about finances. Economic hardships were indirectly linked to increased mental distress by elevating people’s concerns about their household’s finances. Disease threats were both directly linked to mental distress and indirectly through its effects on individual worries about getting ill. Although one might expect that social distancing from people outside the home would have a greater influence on people who live alone, sub-analyses based on household composition do not support this expectation.


    This research provides evidence consistent with the thesis that the COVID-19 pandemic harmed the mental well-being of adults in the United States and identifies specific stressors associated with the pandemic that are responsible for increasing mental distress.

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