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The attitude and behaviors of the different spheres of the community of the United Arab Emirates toward the clinical utility and bioethics of secondary genetic findings: a cross-sectional study

INTRODUCTION: Genome sequencing has utility, however, it may reveal secondary findings. While Western bioethicists have been occupied with managing secondary findings, specialists’ attention in the Arabic countries has not yet been captured. We aim to explore the attitude of the United Arab Emirates...

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Autores principales: Rahma, Azhar T., Abdullahi, Aminu S., Graziano, Giulia, Elbarazi, Iffat
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10626730/
https://www.ncbi.nlm.nih.gov/pubmed/37932866
http://dx.doi.org/10.1186/s40246-023-00548-7
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author Rahma, Azhar T.
Abdullahi, Aminu S.
Graziano, Giulia
Elbarazi, Iffat
author_facet Rahma, Azhar T.
Abdullahi, Aminu S.
Graziano, Giulia
Elbarazi, Iffat
author_sort Rahma, Azhar T.
collection PubMed
description INTRODUCTION: Genome sequencing has utility, however, it may reveal secondary findings. While Western bioethicists have been occupied with managing secondary findings, specialists’ attention in the Arabic countries has not yet been captured. We aim to explore the attitude of the United Arab Emirates (UAE) population toward secondary findings. METHOD: We conducted a cross-sectional study between July and December 2022. The validated questionnaire was administered in English. The questionnaire consists of six sections addressing topics such as demographics, reactions to hypothetical genetic test results, disclosure of mutations to family members, willingness to seek genetic testing, and attitudes toward consanguinity. Chi-squared and Fisher’s exact tests were used to investigate associations between categorical variables. RESULTS: We had 343 participants of which the majority were female (67%). About four-fifths (82%) were willing to know the secondary findings, whether the condition has treatment or not. The most likely action to take among the participants was to know the secondary findings, so they can make life choices (61%). CONCLUSION: These results can construct the framework of the bioethics of disclosing secondary findings in the Arab regions. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40246-023-00548-7.
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spelling pubmed-106267302023-11-07 The attitude and behaviors of the different spheres of the community of the United Arab Emirates toward the clinical utility and bioethics of secondary genetic findings: a cross-sectional study Rahma, Azhar T. Abdullahi, Aminu S. Graziano, Giulia Elbarazi, Iffat Hum Genomics Research INTRODUCTION: Genome sequencing has utility, however, it may reveal secondary findings. While Western bioethicists have been occupied with managing secondary findings, specialists’ attention in the Arabic countries has not yet been captured. We aim to explore the attitude of the United Arab Emirates (UAE) population toward secondary findings. METHOD: We conducted a cross-sectional study between July and December 2022. The validated questionnaire was administered in English. The questionnaire consists of six sections addressing topics such as demographics, reactions to hypothetical genetic test results, disclosure of mutations to family members, willingness to seek genetic testing, and attitudes toward consanguinity. Chi-squared and Fisher’s exact tests were used to investigate associations between categorical variables. RESULTS: We had 343 participants of which the majority were female (67%). About four-fifths (82%) were willing to know the secondary findings, whether the condition has treatment or not. The most likely action to take among the participants was to know the secondary findings, so they can make life choices (61%). CONCLUSION: These results can construct the framework of the bioethics of disclosing secondary findings in the Arab regions. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40246-023-00548-7. BioMed Central 2023-11-06 /pmc/articles/PMC10626730/ /pubmed/37932866 http://dx.doi.org/10.1186/s40246-023-00548-7 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Rahma, Azhar T.
Abdullahi, Aminu S.
Graziano, Giulia
Elbarazi, Iffat
The attitude and behaviors of the different spheres of the community of the United Arab Emirates toward the clinical utility and bioethics of secondary genetic findings: a cross-sectional study
title The attitude and behaviors of the different spheres of the community of the United Arab Emirates toward the clinical utility and bioethics of secondary genetic findings: a cross-sectional study
title_full The attitude and behaviors of the different spheres of the community of the United Arab Emirates toward the clinical utility and bioethics of secondary genetic findings: a cross-sectional study
title_fullStr The attitude and behaviors of the different spheres of the community of the United Arab Emirates toward the clinical utility and bioethics of secondary genetic findings: a cross-sectional study
title_full_unstemmed The attitude and behaviors of the different spheres of the community of the United Arab Emirates toward the clinical utility and bioethics of secondary genetic findings: a cross-sectional study
title_short The attitude and behaviors of the different spheres of the community of the United Arab Emirates toward the clinical utility and bioethics of secondary genetic findings: a cross-sectional study
title_sort attitude and behaviors of the different spheres of the community of the united arab emirates toward the clinical utility and bioethics of secondary genetic findings: a cross-sectional study
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10626730/
https://www.ncbi.nlm.nih.gov/pubmed/37932866
http://dx.doi.org/10.1186/s40246-023-00548-7
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