Dataset Information

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.

ABSTRACT:

Background

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.

Objective

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.

Methods

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.

Results

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 (?_partial²=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 (?_partial²=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 (?_partial²=0.03).

Conclusions

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.

SUBMITTER: Rendina HJ

PROVIDER: S-EPMC6053617 | biostudies-literature | 2018 Jul

REPOSITORIES: biostudies-literature

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Publications

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.

Rendina H Jonathon HJ Mustanski Brian B

Journal of medical Internet research 20180704 7

<h4>Background</h4>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.<h4>Objective</h4>The objective of our study was to analyze data from an online sample of 11,032 GBMSM in the United States t ...[more]

PMID: 29973332

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Project description:BACKGROUND:Advances in medicine rely to a great extent on people's willingness to share their data with researchers. With increasingly widespread use of digital technologies, several Web-based communities have emerged aiming to enable their users to share large amounts of data, some of which can possibly be employed for research purposes by scientists, or to conduct participant-led research (PLR). Scholarship has recently addressed the necessity of interrogating how existing ethical standards can and should be applied and adapted in view of the specificities of such Web-based activities. So far, no study has explored participants' beliefs about and attitudes toward ethical oversight when it comes to platforms that involve medical data sharing. OBJECTIVE:This paper presents the protocol for a survey study aimed at understanding users' beliefs about Web-based data-sharing platforms regarding how research ethics principles should be applied in such a setting. Furthermore, the study aims at quantitatively assessing the relationship between participants' perspectives on ethical oversight and other variables such as previous participation in research, beliefs about data sharing, and attitudes toward self-experimentation. METHODS:We are conducting a Web-based survey with users of a popular Web-based data-sharing platform, Open Humans. The survey has been sent to approximately 4640 users registered for the Open Humans newsletter. To fill out the survey, participants need to have an account on Open Humans. We expect a 5%-10% response rate (between 200 and 400 completed surveys out of approximately 4000 survey invitations sent). Independent variables include past data-sharing behavior and intention, beliefs about data sharing, past participation in research, attitudes toward self-experimentation, perceived knowledge of the platform's guidelines and terms, perceived importance of having transparent guidelines, and governance-related beliefs. The main dependent variable is participants' expectations regarding who should ensure that ethical requirements are met within research projects conducted on open data-sharing platforms, based on Emanuel et al's ethical framework. We will use chi-square tests to assess the relationship between participants' expectations regarding ethical oversight and their past behavior, future intentions, beliefs, attitudes, and knowledge. RESULTS:Data collection started on June 13, 2018. A reminder to fill out the survey was sent to participants in mid-July. We expect to gain insights on users' perspectives on the ethical oversight of Web-based data-sharing platforms and on the associated experiences, beliefs, and sociodemographic characteristics. CONCLUSIONS:When digital tools allow people to engage in PLR including medical data, understanding how people interpret and envision the ethical oversight of their data-sharing practices is crucial. This will be the first study to explore users' perspectives on ethical oversight of Web-based data-sharing platforms. The results will help inform the development of a framework that can be employed for platforms hosting various kinds of research projects to accommodate participants' ethical oversight needs. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):RR1-10.2196/10939.

Project description:BackgroundIn the asymptomatic "preclinical" phase of Alzheimer's disease (AD), abnormal biomarkers indicate risk for developing cognitive impairment. Biomarker information is increasingly being disclosed to participants in research settings, and biomarker testing and results disclosure will be implemented in clinical settings in the future. Biomarker disclosure has potential psychosocial benefits and harms, impacting affected individuals and their support person(s). Limited data are available about with whom research participants share their results, information that will be necessary to develop disclosure protocols and post-disclosure resources. Additionally, existing research has been conducted in largely White cohorts, limiting applicability to future clinical populations.MethodsWe enrolled a diverse cohort of 329 adults (184 non-Hispanic White and 145 Black/African American individuals) who previously participated in AD research. After reviewing a vignette describing a hypothetical biomarker research study, participants indicated their anticipated willingness to share biomarker results with loved ones, and what reactions they anticipated from others. Using mixed-methods analysis, we identified responses related to willingness to share results.ResultsA majority (78.7%) were willing to share their results with support persons. Many (59.6%) felt it would not be difficult to share, and most (90.6%) believed their loved ones would be supportive. The most common reasons for sharing were to prepare for possible future AD (41.0% of respondents), while the most common reason for not sharing was to avoid worrying loved ones (4.8% of respondents). A total of 7.3% of respondents related reasons regarding being unsure about sharing.DiscussionParticipants' interest in sharing results supports integrating support persons into AD biomarker research, and may help maximize potential benefits for participants. Communicating with this "dyad" of research participant and support person(s) may improve involvement in research, and help prepare for implementation of clinical biomarker testing by clarifying communication preferences and the influence of support persons on psychosocial outcomes.

Dataset Information

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.

Background

Objective

Methods

Results

Conclusions

Publications

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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