The Effect of Exposure to Social Annotation on Online Informed Consent Beliefs and Behavior

Balestra, Martina; Shaer, Orit; Okerlund, Johanna; Ball, Mad Price; Nov, Oded

doi:10.1145/2818048.2820012

Cited by 16 publications

(10 citation statements)

References 47 publications

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“…Among the randomized controlled trials, only 3 studies [ 25 - 27 ] received a quality score of 3. Quality scores of 2 and 1 were provided to 1 study [ 28 ] and 6 studies [ 29 - 34 ], respectively. The qualitative studies ranged from satisfying 80% or more of the quality criteria (6 studies) [ 35 - 40 ] to satisfying 50% to 60% of the quality criteria (3 studies) [ 41 - 43 ].…”

Section: Resultsmentioning

confidence: 99%

“…The usefulness of additional content elements such as definitions was articulated in a focus group involving research participants who were older adults [ 45 ]. Moreover, exposing research participants to social annotation, such as comments generated by end users on several aspects of the electronic informed consent form, was considered important to feel adequately informed [ 29 ]. However, the emotional force communicated in social annotations has an influence on research participants’ perceptions with regard to information given in electronic informed consent.…”

Section: Resultsmentioning

confidence: 99%

“…In some studies [ 28 , 33 , 34 , 39 , 44 - 46 , 48 , 55 , 60 , 62 ], the majority of participants had a high level of education. It should also be noted that a number of studies [ 27 , 29 , 51 ] assessing comprehension did not report the education level of their participants. Therefore, there might be additional barriers for less educated participants to achieving an adequate level of understanding.…”

Section: Discussionmentioning

confidence: 99%

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Implementation of Electronic Informed Consent in Biomedical Research and Stakeholders’ Perspectives: Systematic Review

Sutter¹,

Zaçe²,

Boccia³

et al. 2020

J Med Internet Res

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Background Informed consent is one of the key elements in biomedical research. The introduction of electronic informed consent can be a way to overcome many challenges related to paper-based informed consent; however, its novel opportunities remain largely unfulfilled due to several barriers. Objective We aimed to provide an overview of the ethical, legal, regulatory, and user interface perspectives of multiple stakeholder groups in order to assist responsible implementation of electronic informed consent in biomedical research. Methods We conducted a systematic literature search using Web of Science (Core collection), PubMed, EMBASE, ACM Digital Library, and PsycARTICLES. PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were used for reporting this work. We included empirical full-text studies focusing on the concept of electronic informed consent in biomedical research covering the ethical, legal, regulatory, and user interface domains. Studies written in English and published from January 2010 onward were selected. We explored perspectives of different stakeholder groups, in particular researchers, research participants, health authorities, and ethics committees. We critically appraised literature included in the systematic review using the Newcastle-Ottawa scale for cohort and cross-sectional studies, Critical Appraisal Skills Programme for qualitative studies, Mixed Methods Appraisal Tool for mixed methods studies, and Jadad tool for randomized controlled trials. Results A total of 40 studies met our inclusion criteria. Overall, the studies were heterogeneous in the type of study design, population, intervention, research context, and the tools used. Most of the studies’ populations were research participants (ie, patients and healthy volunteers). The majority of studies addressed barriers to achieving adequate understanding when using electronic informed consent. Concerns shared by multiple stakeholder groups were related to the security and legal validity of an electronic informed consent platform and usability for specific groups of research participants. Conclusions Electronic informed consent has the potential to improve the informed consent process in biomedical research compared to the current paper-based consent. The ethical, legal, regulatory, and user interface perspectives outlined in this review might serve to enhance the future implementation of electronic informed consent. Trial Registration PROSPERO International Prospective Register of Systematic Reviews CRD42020158979; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=158979

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Implementation of Electronic Informed Consent in Biomedical Research and Stakeholders’ Perspectives: Systematic Review

Sutter¹,

Zaçe²,

Boccia³

et al. 2020

J Med Internet Res

View full text Add to dashboard Cite

show abstract

“…They found that this information could impact user decisions, but only if the cues were sufficiently strong. Balestra et al [5] studied the impact of exposure to social annotations on privacy consent for a genomics application. These annotations had the general effect of making users feel more informed, but also less confident in their understanding of the application and less trusting in the institution soliciting the consent.…”

Section: :5mentioning

confidence: 99%

The Influence of Friends and Experts on Privacy Decision Making in IoT Scenarios

Naeini

Degeling

Bauer

et al. 2018

Proc. ACM Hum.-Comput. Interact.

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As increasingly many Internet-of-Things (IoT) devices collect personal data, users face more privacy decisions. Personal privacy assistants can provide social cues and help users make informed decisions by presenting information about how others have decided in similar cases. To better understand which social cues are relevant and whose recommendations users are more likely to follow, we presented 1000 online participants with nine IoT data-collection scenarios. Some participants were told the percentage of experts or friends who allowed data collection in each scenario, while other participants were provided no social cue. At the conclusion of each scenario, participants were asked whether they would allow the described data collection. Our results help explain under what circumstances users are more or less likely to be swayed by the reported behavior of others in similar scenarios. For example, our results indicate that when friends denied data collection, our participants were more influenced than when friends allowed data collection. On the other hand, participants were more influenced by experts when they allowed data collection. We also observed that influence could get stronger or wear off when participants were exposed to a sequence of scenarios. For example, when experts and friends repeatedly allowed data collection in scenarios with clear risk or denied it in scenarios with clear benefits, participants were less likely to be influenced by them in subsequent scenarios. CCS Concepts: • Security and privacy → Social aspects of security and privacy; • Human-centered computing → User models;

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“…In a previous study [ 6 ], we hypothesized that incorporating user-generated social annotations into online consent forms with complex content would allow individuals to benefit and learn from others’ perspectives, knowledge, and ideas by encouraging discussion and helping to focus attention on the issues that users find important. We designed such a tool and evaluated it compared to a control condition of an online consent form with no social annotation.…”

Section: Introductionmentioning

confidence: 99%

Social Annotation Valence: The Impact on Online Informed Consent Beliefs and Behavior

et al. 2016

Self Cite

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BackgroundSocial media, mobile and wearable technology, and connected devices have significantly expanded the opportunities for conducting biomedical research online. Electronic consent to collecting such data, however, poses new challenges when contrasted to traditional consent processes. It reduces the participant-researcher dialogue but provides an opportunity for the consent deliberation process to move from solitary to social settings. In this research, we propose that social annotations, embedded in the consent form, can help prospective participants deliberate on the research and the organization behind it in ways that traditional consent forms cannot. Furthermore, we examine the role of the comments’ valence on prospective participants’ beliefs and behavior.ObjectiveThis study focuses specifically on the influence of annotations’ valence on participants’ perceptions and behaviors surrounding online consent for biomedical research. We hope to shed light on how social annotation can be incorporated into digitally mediated consent forms responsibly and effectively.MethodsIn this controlled between-subjects experiment, participants were presented with an online consent form for a personal genomics study that contained social annotations embedded in its margins. Individuals were randomly assigned to view the consent form with positive-, negative-, or mixed-valence comments beside the text of the consent form. We compared participants’ perceptions of being informed and having understood the material, their trust in the organization seeking the consent, and their actual consent across conditions.ResultsWe find that comment valence has a marginally significant main effect on participants’ perception of being informed (F2=2.40, P=.07); specifically, participants in the positive condition (mean 4.17, SD 0.94) felt less informed than those in the mixed condition (mean 4.50, SD 0.69, P=.09). Comment valence also had a marginal main effect on the extent to which participants reported trusting the organization (F2=2.566, P=.08). Participants in the negative condition (mean 3.59, SD 1.14) were marginally less trusting than participants exposed to the positive condition (mean 4.02, SD 0.90, P=.06). Finally, we found that consent rate did not differ across comment valence conditions; however, participants who spent less time studying the consent form were more likely to consent when they were exposed to positive-valence comments.ConclusionsThis work explores the effects of adding a computer-mediated social dimension, which inherently contains human emotions and opinions, to the consent deliberation process. We proposed that augmenting the consent deliberation process to incorporate multiple voices can enable individuals to capitalize on the knowledge of others, which brings to light questions, problems, and concerns they may not have considered on their own. We found that consent forms containing positive valence annotations are likely to lead participants to feel less informed and simultaneously more trusting of the orga...

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The Effect of Exposure to Social Annotation on Online Informed Consent Beliefs and Behavior

Cited by 16 publications

References 47 publications

Implementation of Electronic Informed Consent in Biomedical Research and Stakeholders’ Perspectives: Systematic Review

Implementation of Electronic Informed Consent in Biomedical Research and Stakeholders’ Perspectives: Systematic Review

The Influence of Friends and Experts on Privacy Decision Making in IoT Scenarios

Social Annotation Valence: The Impact on Online Informed Consent Beliefs and Behavior

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