Privacy, Trust, and Data Sharing in Web-Based and Mobile Research: Participant Perspectives in a Large Nationwide Sample of Men Who Have Sex With Men in the United States.
Privacy, Trust, and Data Sharing in Web-Based and Mobile Research: Participant Perspectives in a Large Nationwide Sample of Men Who Have Sex With Men in the United States.
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DOI：
10.2196/jmir.9019
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发表时间：
2018-07-04
影响因子：
7.4
通讯作者：
Mustanski B
中科院分区：
文献类型：
--
作者：
Rendina HJ;Mustanski B
现代研究严重依赖在线和移动的技术，这在历史上难以接触的人群中尤其如此，如同性恋、双性恋和其他男男性行为者（GBMSM）。尽管如此，很少有实证研究已发表的参与者的观点，如隐私，信任和数据共享的问题。我们研究的目的是分析来自美国11，032名GBMSM的在线样本的数据，以检查他们对在线和移动的研究中隐私和数据共享的信任和观点。参与者通过社交网站或性网络应用程序招募，以完成匿名在线调查。我们进行了一系列的重复测量分析，调整了人与人之间的因素，以检查以下方面的人内差异：（1）在不同场所保护个人信息的信任（例如，由大学进行的在线研究与在线搜索引擎）;（2）三种不同数据活动的12种不同类型数据的隐私问题（即应用程序所有者的收集，匿名出售给第三方，并与研究人员匿名共享）;（3）愿意与研究人员共享这12种不同类型的数据。由于样本量大，我们主要报告效应量的测量作为临床意义的证据。在线研究被评为最值得信赖的，比在线和移动的技术公司，如应用程序所有者和搜索引擎，更值得信赖的影响程度是中等到大（η partial 2 =0.06-0.11）。在回答大约12种不同类型的数据时，参与者对数据被匿名出售给第三方合作伙伴表示了更多的担忧（平均值7.6，中位数10.0），对应用程序所有者收集数据的担忧较少（平均5.8，中位数5.0）或匿名与研究人员分享（平均值4.6，中位数3.0）;差异的大小为小至中度（η部分2 =0.01-0.03）。此外，参与者最愿意与研究人员分享他们的公共个人资料信息（例如，年龄），但最不愿意分享设备使用信息（例如，安装的其他应用程序）;比较的大小为小到中等（η部分2 =0.03）。与会者报告了对在线和移动的研究的高度信任，鉴于最近备受瞩目的企业和政府数据安全漏洞和隐私侵犯案件，这一点值得注意。研究人员和伦理委员会应该跟上技术的变化，以保持保护隐私和机密性并保持信任的能力。对隐私的关注和分享不同类型数据的意愿存在很大差异，这表明需要在特定而非广泛的基础上获得数据分享的同意。最后，我们看到了隐私悖论的证据，参与者表达了对他们可能已经通过他们经常使用的应用程序和网站的条款允许的数据相关活动类型的隐私担忧。
Modern research is heavily reliant on online and mobile technologies, which is particularly true among historically hard-to-reach populations such as gay, bisexual, and other men who have sex with men (GBMSM). Despite this, very little empirical research has been published on participant perspectives about issues such as privacy, trust, and data sharing. The objective of our study was to analyze data from an online sample of 11,032 GBMSM in the United States to examine their trust in and perspectives on privacy and data sharing within online and mobile research. Participants were recruited via a social networking site or sexual networking app to complete an anonymous online survey. We conducted a series of repeated measures analyses adjusted for between-person factors to examine within-person differences in the following: (1) trust for guarding personal information across different venues (eg, online research conducted by a university vs. an online search engine); (2) privacy concerns about 12 different types of data for three distinct data activities (ie, collection by app owners, anonymous selling to third parties, and anonymous sharing with researchers); and (3) willingness to share those 12 different types of data with researchers. Due to the large sample size, we primarily reported measures of effect size as evidence of clinical significance. Online research was rated as most trusted and was more trusted than online and mobile technology companies, such as app owners and search engines, by magnitudes of effect that were moderate-to-large (ηpartial2=0.06-0.11). Responding about 12 different types of data, participants expressed more concerns about data being anonymously sold to third-party partners (mean 7.6, median 10.0) and fewer concerns about data being collected by the app owners (mean 5.8, median 5.0) or shared anonymously with researchers (mean 4.6, median 3.0); differences were small-to-moderate in size (ηpartial2=0.01-0.03). Furthermore, participants were most willing to share their public profile information (eg, age) with researchers but least willing to share device usage information (eg, other apps installed); the comparisons were small-to-moderate in size (ηpartial2=0.03). Participants reported high levels of trust in online and mobile research, which is noteworthy given recent high-profile cases of corporate and government data security breaches and privacy violations. Researchers and ethical boards should keep up with technological shifts to maintain the ability to guard privacy and confidentiality and maintain trust. There was substantial variability in privacy concerns about and willingness to share different types of data, suggesting the need to gain consent for data sharing on a specific rather than broad basis. Finally, we saw evidence of a privacy paradox, whereby participants expressed privacy concerns about the very types of data-related activities they have likely already permitted through the terms of the apps and sites they use regularly.
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影响因子：
7.4
作者：
Bender JL;Cyr AB;Arbuckle L;Ferris LE
通讯作者：
Ferris LE
DOI：
10.1007/s11524-005-9008-3
发表时间：
2006-01-01
影响因子：
6.6
作者：
Chiasson, MA;Parsons, JT;Remien, RH
通讯作者：
Remien, RH
影响因子：
3.3
作者：
Fife, Elizabeth;Orjuela, Juan
通讯作者：
Orjuela, Juan
影响因子：
3.6
作者：
Grov C;Breslow AS;Newcomb ME;Rosenberger JG;Bauermeister JA
通讯作者：
Bauermeister JA
影响因子：
3.7
作者：
Cheung C;Bietz MJ;Patrick K;Bloss CS
通讯作者：
Bloss CS