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Jordanians’ Perspectives On Open Consent In Biomedical Research

INTRODUCTION: The informed consent process is an integral step in biomedical research. However, the emergence of biobanks and the need for open consent (also called “broad” or “blanket” consent) create challenges to this process. AIMS AND METHODOLOGY: A survey was used to examine Jordanians’ perspec...

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Autores principales: Alrabadi, Nasr, Makhlouf, Hanin, Khabour, Omar F, Alzoubi, Karem H
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Dove 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6897061/
https://www.ncbi.nlm.nih.gov/pubmed/31819687
http://dx.doi.org/10.2147/RMHP.S217209
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author Alrabadi, Nasr
Makhlouf, Hanin
Khabour, Omar F
Alzoubi, Karem H
author_facet Alrabadi, Nasr
Makhlouf, Hanin
Khabour, Omar F
Alzoubi, Karem H
author_sort Alrabadi, Nasr
collection PubMed
description INTRODUCTION: The informed consent process is an integral step in biomedical research. However, the emergence of biobanks and the need for open consent (also called “broad” or “blanket” consent) create challenges to this process. AIMS AND METHODOLOGY: A survey was used to examine Jordanians’ perspectives on open consent and reuse of stored samples in future research. RESULTS: The majority of participants had positive perceptions of informed consent and its importance. In addition, they appreciated the challenges that are associated with multiple uses of their biospecimens. About 55% agreed to provide open consent for reuse of their donated biospecimens. Participants (75–80%) also agreed that issues such as the possibility of sharing samples with international research centers, storage duration, and use of biospecimens after their death should be clarified as part of open consent. The inconvenience of the re-contact process, trust in the research team, and the importance of biobanks were all associated with participants’ willingness to provide open consent (P<0.05). On the other hand, privacy and confidentiality, doubt about future use of samples, unknown storage period, and the possibility of cross-border sample sharing were significantly associated with participants’ reluctance to provide open consent. CONCLUSION: The majority of Jordanians accept the idea of open consent. Clarification of issues such as international sample sharing, duration of storage, domains of intended research, confidentiality, and privacy can provide more support for the use of open consent.
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spelling pubmed-68970612019-12-09 Jordanians’ Perspectives On Open Consent In Biomedical Research Alrabadi, Nasr Makhlouf, Hanin Khabour, Omar F Alzoubi, Karem H Risk Manag Healthc Policy Original Research INTRODUCTION: The informed consent process is an integral step in biomedical research. However, the emergence of biobanks and the need for open consent (also called “broad” or “blanket” consent) create challenges to this process. AIMS AND METHODOLOGY: A survey was used to examine Jordanians’ perspectives on open consent and reuse of stored samples in future research. RESULTS: The majority of participants had positive perceptions of informed consent and its importance. In addition, they appreciated the challenges that are associated with multiple uses of their biospecimens. About 55% agreed to provide open consent for reuse of their donated biospecimens. Participants (75–80%) also agreed that issues such as the possibility of sharing samples with international research centers, storage duration, and use of biospecimens after their death should be clarified as part of open consent. The inconvenience of the re-contact process, trust in the research team, and the importance of biobanks were all associated with participants’ willingness to provide open consent (P<0.05). On the other hand, privacy and confidentiality, doubt about future use of samples, unknown storage period, and the possibility of cross-border sample sharing were significantly associated with participants’ reluctance to provide open consent. CONCLUSION: The majority of Jordanians accept the idea of open consent. Clarification of issues such as international sample sharing, duration of storage, domains of intended research, confidentiality, and privacy can provide more support for the use of open consent. Dove 2019-12-02 /pmc/articles/PMC6897061/ /pubmed/31819687 http://dx.doi.org/10.2147/RMHP.S217209 Text en © 2019 Alrabadi et al. http://creativecommons.org/licenses/by-nc/3.0/ This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License (http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms (https://www.dovepress.com/terms.php).
spellingShingle Original Research
Alrabadi, Nasr
Makhlouf, Hanin
Khabour, Omar F
Alzoubi, Karem H
Jordanians’ Perspectives On Open Consent In Biomedical Research
title Jordanians’ Perspectives On Open Consent In Biomedical Research
title_full Jordanians’ Perspectives On Open Consent In Biomedical Research
title_fullStr Jordanians’ Perspectives On Open Consent In Biomedical Research
title_full_unstemmed Jordanians’ Perspectives On Open Consent In Biomedical Research
title_short Jordanians’ Perspectives On Open Consent In Biomedical Research
title_sort jordanians’ perspectives on open consent in biomedical research
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6897061/
https://www.ncbi.nlm.nih.gov/pubmed/31819687
http://dx.doi.org/10.2147/RMHP.S217209
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