Trust in Centralized Large-Scale Data Repository: A Qualitative Analysis

Reinder Broekstra; Judith Aris-Meijer; Els Maeckelberghe; Ronald Stolk; Sabine Otten

doi:10.1177/1556264619888365

Trust in Centralized Large-Scale Data Repository: A Qualitative Analysis

Reinder Broekstra^*, Judith Aris-Meijer, Els Maeckelberghe, Ronald Stolk, Sabine Otten

^*Corresponding author voor dit werk

Onderzoeksoutput: Article › Academic › peer review

13 Citaten (Scopus)

255 Downloads (Pure)

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Exponential increases in digital data and calls for participation in human research raise questions about when and why individuals voluntarily provide personal data. We conducted 36 in-depth interviews with ex-participants, participants, and nonparticipants in a biobank to identify key factors influencing trust in centralized large-scale data repository for human research. Our findings indicated that trust depends strongly on whether such data repository benefits the public, the interests of data collectors, the characteristics of the collected data, and application of informed consent for retaining control over personal data. Concerns about the aims and range of data repository appeared to influence withdrawal of participation. Our findings underscore ethical and practical issues relating to data collection and consent procedures in human research.

Originele taal-2	English
Pagina's (van-tot)	365-378
Aantal pagina's	14
Tijdschrift	Journal of empirical research on human research ethics
Volume	15
Nummer van het tijdschrift	4
Vroegere onlinedatum	18-nov.-2019
DOI's	https://doi.org/10.1177/1556264619888365
Status	Published - 1-okt.-2020

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10.1177/1556264619888365Licentie: CC BY

Trust in Centralized Large-Scale Data Repository: A Qualitative AnalysisFinal publisher's version, 148 KBLicentie: CC BY

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13 Citaties
1 Article

Motives for withdrawal of participation in biobanking and participants’ willingness to allow linkages of their data
Broekstra, R., Aris-Meijer, J., Maeckelberghe, E. L. M., Stolk, R. & Otten, S., mrt.-2022, In: European Journal of Human Genetics. 30, blz. 367–377 11 blz.
Onderzoeksoutput: Article › Academic › peer review

Open Access
Bestand
11 Citaten (Scopus)

109 Downloads (Pure)

3 Professional or public presentation
2 Academic presentation

Deelname in complexe gegevensverzameling: vertrouwen en solidariteit
Broekstra, R. (Invited speaker)
5-apr.-2022
Activiteit: Professional or public presentation › Professional
Factoren voor deelname/niet-deelname aan biobanken zoals Geneticlines
Broekstra, R. (Invited speaker)
16-nov.-2021
Activiteit: Professional or public presentation › Professional
online workshop bescherming patiëntgegevens in wetenschappelijk onderzoek
Broekstra, R. (Invited speaker), Stolk, R. (Contributor), Otten, S. (Contributor), Maeckelberghe, E. (Contributor) & Aris-Meijer, J. (Contributor)
19-feb.-2021
Activiteit: Academic presentation › Academic

Citeer dit

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title = "Trust in Centralized Large-Scale Data Repository: A Qualitative Analysis",

abstract = "Exponential increases in digital data and calls for participation in human research raise questions about when and why individuals voluntarily provide personal data. We conducted 36 in-depth interviews with ex-participants, participants, and nonparticipants in a biobank to identify key factors influencing trust in centralized large-scale data repository for human research. Our findings indicated that trust depends strongly on whether such data repository benefits the public, the interests of data collectors, the characteristics of the collected data, and application of informed consent for retaining control over personal data. Concerns about the aims and range of data repository appeared to influence withdrawal of participation. Our findings underscore ethical and practical issues relating to data collection and consent procedures in human research.",

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AU - Otten, Sabine

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KW - inclusion

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KW - INFORMED-CONSENT

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Trust in Centralized Large-Scale Data Repository: A Qualitative Analysis

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Toegang tot document

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Onderzoekersoutput

Motives for withdrawal of participation in biobanking and participants’ willingness to allow linkages of their data

Activiteiten

Deelname in complexe gegevensverzameling: vertrouwen en solidariteit

Factoren voor deelname/niet-deelname aan biobanken zoals Geneticlines

online workshop bescherming patiëntgegevens in wetenschappelijk onderzoek

Citeer dit