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Cohort participants' understanding of broad consent for future use of data and samples. A cognitive interview study of the University of California at Berkeley's template informed consent form for biomedical research.
Principal Investigator(s): View help for Principal Investigator(s) Lauren Maxwell, University of Heidelberg
Version: View help for Version V1
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Project Citation:
Maxwell, Lauren . Cohort participants’ understanding of broad consent for future use of data and samples. A cognitive interview study of the University of California at Berkeley’s template informed consent form for biomedical research. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2022-06-29. https://doi.org/10.3886/E173322V1
Project Description
Summary:
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Informed consent (IC) is key to generating and maintaining research participants' trust and upholding the ethical principle of respect for persons. Broad consent for future use, wherein researchers ask participants for their permission to share participant-level data and samples collected within the study for purposes loosely related to the study objectives, is central to enabling data and sample reuse. Ensuring that participants understand broad consent-related language is key to maintaining their trust in the study itself and in public health research more generally. To ensure research projects' adherence to core ethical principles, many research centres, ethics review committees (ERCs), and journals ask that studies use templates for informed consent and have different levels of comfort with investigators' deviation from the template language.
Funding Sources:
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RECODID project, which is funded by the EU Horizon 2020 research and innovation programme (grant agreement 825746) and the CIHR Institute of Genetics (grant agreement 01886-000).
Methodology
Sampling:
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We conducted cognitive interviews to explore cohort research participants' understanding of the language in the University of California at Berkeley (UCB) template IC form for biomedical research with participants from long-standing infectious disease cohort studies in Nicaragua, which is linked to UCB, and Colombia, which is not. We used a semi-structured interview guide to assess cohort participants' agreement with broad consent for future use of clinical and genomic data and specimens. Subsequent to the first round of interviews, we used participants’ explanations to modify the broad consent-related language in the IC template and evaluated participants’ understanding of and agreement with the new consent.
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