2021
DOI: 10.1016/j.ijmedinf.2021.104623
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Governing health data across changing contexts: A focus group study of citizen’s views in England, Iceland, and Sweden

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Cited by 12 publications
(12 citation statements)
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“…Health information counseling services may be especially relevant for decisions concerned with the use of one's data for purposes other than those for which it was originally collected. The reuse of health data can occur in contexts with norms and values different from those upheld in research and care settings and which are more often subject to “data trust deficits” ( 71 ). Commercial settings such as direct-to-consumer genetic testing companies are one such example where values such as transparency and reciprocity may be overridden by economic interest (e.g., patenting consumer data that was first shared under the pretense that it would be used to democratize genomics) [see ( 72 )].…”
Section: Discussionmentioning
confidence: 99%
“…Health information counseling services may be especially relevant for decisions concerned with the use of one's data for purposes other than those for which it was originally collected. The reuse of health data can occur in contexts with norms and values different from those upheld in research and care settings and which are more often subject to “data trust deficits” ( 71 ). Commercial settings such as direct-to-consumer genetic testing companies are one such example where values such as transparency and reciprocity may be overridden by economic interest (e.g., patenting consumer data that was first shared under the pretense that it would be used to democratize genomics) [see ( 72 )].…”
Section: Discussionmentioning
confidence: 99%
“…A narrative review of the literature highlights the fact that social licenses for data-intensive health research cannot be assumed [205]. Trust and its absence had a considerable impact on the acceptance of the secondary use of health data without specific consent [136,191,198]. Muller et al [206] emphasized the merits of using the concept of social license as a reference for ethical governance and highlighted the strategic importance of dialogue with patients and members of the public.…”
Section: Interpretation Of Findingsmentioning
confidence: 99%
“…Technology in itself is neither good nor bad, but the purpose for which is applied may be beneficial or harmful to individuals or society (Pitt, 2019). Similarly, the data sharing phenomenon has positive advantages (understanding the subtle differences in individual behaviours, lifestyles and health, assisting healthcare providers to monitor and treat disease (Shah et al. , 2021), enhancing transparency between healthcare providers and patients to better chronic disease management (Dinh-Le et al.…”
Section: Literature Reviewmentioning
confidence: 99%
“…Health-related data have travelled across boundaries between research, commercial and marketing contexts. Such cross-border sharing of data may potentially violate the expectations regarding the appropriate use of the data and erode public trust (Shah et al. , 2021).…”
Section: Literature Reviewmentioning
confidence: 99%
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