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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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Detalles Bibliográficos
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
Descripción
Sumario: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.