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Qualitative Data Sharing: Participant Understanding, Motivation, and Consent

Expectations to share data underlying studies are increasing, but research on how participants, particularly those in qualitative research, respond to requests for data sharing is limited. We studied research participants’ willingness to, understanding of, and motivations for data sharing. As part o...

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Detalles Bibliográficos
Autores principales: VandeVusse, Alicia, Mueller, Jennifer, Karcher, Sebastian
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8739617/
https://www.ncbi.nlm.nih.gov/pubmed/34847803
http://dx.doi.org/10.1177/10497323211054058
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author VandeVusse, Alicia
Mueller, Jennifer
Karcher, Sebastian
author_facet VandeVusse, Alicia
Mueller, Jennifer
Karcher, Sebastian
author_sort VandeVusse, Alicia
collection PubMed
description Expectations to share data underlying studies are increasing, but research on how participants, particularly those in qualitative research, respond to requests for data sharing is limited. We studied research participants’ willingness to, understanding of, and motivations for data sharing. As part of a larger qualitative study on abortion reporting, we conducted interviews with 64 cisgender women in two states in early 2020 and asked for consent to share de-identified data. At the end of interviews, we asked participants to reflect on their motivations for agreeing or declining to share their data. The vast majority of respondents consented to data sharing and reported that helping others was a primary motivation for agreeing to share their data. However, a substantial number of participants showed a limited understanding of the concept of “data sharing.” Additional research is needed on how to improve participants’ understanding of data sharing and thus ensure fully informed consent.
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spelling pubmed-87396172022-01-08 Qualitative Data Sharing: Participant Understanding, Motivation, and Consent VandeVusse, Alicia Mueller, Jennifer Karcher, Sebastian Qual Health Res Research Articles Expectations to share data underlying studies are increasing, but research on how participants, particularly those in qualitative research, respond to requests for data sharing is limited. We studied research participants’ willingness to, understanding of, and motivations for data sharing. As part of a larger qualitative study on abortion reporting, we conducted interviews with 64 cisgender women in two states in early 2020 and asked for consent to share de-identified data. At the end of interviews, we asked participants to reflect on their motivations for agreeing or declining to share their data. The vast majority of respondents consented to data sharing and reported that helping others was a primary motivation for agreeing to share their data. However, a substantial number of participants showed a limited understanding of the concept of “data sharing.” Additional research is needed on how to improve participants’ understanding of data sharing and thus ensure fully informed consent. SAGE Publications 2021-12-01 2022-01 /pmc/articles/PMC8739617/ /pubmed/34847803 http://dx.doi.org/10.1177/10497323211054058 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by-nc/4.0/This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Research Articles
VandeVusse, Alicia
Mueller, Jennifer
Karcher, Sebastian
Qualitative Data Sharing: Participant Understanding, Motivation, and Consent
title Qualitative Data Sharing: Participant Understanding, Motivation, and Consent
title_full Qualitative Data Sharing: Participant Understanding, Motivation, and Consent
title_fullStr Qualitative Data Sharing: Participant Understanding, Motivation, and Consent
title_full_unstemmed Qualitative Data Sharing: Participant Understanding, Motivation, and Consent
title_short Qualitative Data Sharing: Participant Understanding, Motivation, and Consent
title_sort qualitative data sharing: participant understanding, motivation, and consent
topic Research Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8739617/
https://www.ncbi.nlm.nih.gov/pubmed/34847803
http://dx.doi.org/10.1177/10497323211054058
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