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 for this work

Research output: Contribution to journal › Article › Academic › peer-review

13 Citations (Scopus)

264 Downloads (Pure)

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.

Original language	English
Pages (from-to)	365-378
Number of pages	14
Journal	Journal of empirical research on human research ethics
Volume	15
Issue number	4
Early online date	18-Nov-2019
DOIs	https://doi.org/10.1177/1556264619888365
Publication status	Published - 1-Oct-2020

Keywords

trust
big data
biorepositories
biobanks
cohort study
decision making
qualitative methods
the Netherlands
justice
participant selection
inclusion
recruitment
INFORMED-CONSENT
BIOBANK RESEARCH
PARTICIPANTS
HEALTH
COMMERCIALIZATION
PERCEPTIONS
INTENTION
DISTRUST
DECISION
COHORT

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10.1177/1556264619888365Licence: CC BY

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

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13 Citations
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., Mar-2022, In: European Journal of Human Genetics. 30, p. 367–377 11 p.
Research output: Contribution to journal › Article › Academic › peer-review

Open Access
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11 Citations (Scopus)

91 Downloads (Pure)

3 Professional or public presentation
2 Academic presentation

Participation in complex data repositories: Trust and Solidarity
Broekstra, R. (Invited speaker)
5-Apr-2022
Activity: Talk and presentation › Professional or public presentation › Professional
Factors of participation/non-participation in GeneticLines as a scientific data repository
Broekstra, R. (Invited speaker)
16-Nov-2021
Activity: Talk and presentation › Professional or public presentation › Professional
Health-RI workshop protection of patient data in scientific research
Broekstra, R. (Invited speaker), Stolk, R. (Contributor), Otten, S. (Contributor), Maeckelberghe, E. (Contributor) & Aris-Meijer, J. (Contributor)
19-Feb-2021
Activity: Talk and presentation › Academic presentation › Academic

Cite this

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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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author = "Reinder Broekstra and Judith Aris-Meijer and Els Maeckelberghe and Ronald Stolk and Sabine Otten",

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AU - Aris-Meijer, Judith

AU - Maeckelberghe, Els

AU - Stolk, Ronald

AU - Otten, Sabine

PY - 2020/10/1

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KW - participant selection

KW - inclusion

KW - recruitment

KW - INFORMED-CONSENT

KW - BIOBANK RESEARCH

KW - PARTICIPANTS

KW - HEALTH

KW - COMMERCIALIZATION

KW - PERCEPTIONS

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KW - COHORT

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

Abstract

Keywords

Access to Document

Handle.net

Fingerprint

Research output

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

Activities

Participation in complex data repositories: Trust and Solidarity

Factors of participation/non-participation in GeneticLines as a scientific data repository

Health-RI workshop protection of patient data in scientific research

Cite this