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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...
Autores principales: | , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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SAGE Publications
2021
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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. |
format | Online Article Text |
id | pubmed-8739617 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
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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