Willingness to participate in genome testing: a survey of public attitudes from Qatar
<p dir="ltr">Genomics has the potential to revolutionize medical approaches to disease prevention, diagnosis, and treatment, but it does not come without challenges. The success of a national population-based genome program, like the Qatar Genome Program (QGP), depends on the willing...
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2020
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| _version_ | 1864513515975344128 |
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| author | Hanan F. Abdul Rahim (9330201) |
| author2 | Said I. Ismail (11721428) Amel Hassan (14151231) Tasnim Fadl (14152533) Salma M. Khaled (13847737) Bethany Shockley (10799182) Catherine Nasrallah (7504172) Yara Qutteina (14152536) Engi Elmaghraby (14152539) Heba Yasin (14152542) Dima Darwish (14152545) Khalid A. Fakhro (3158862) Radja Badji (14152548) Wadha Al-Muftah (14152551) Nahla Afifi (193245) Asmaa Althani (499903) |
| author2_role | author author author author author author author author author author author author author author author |
| author_facet | Hanan F. Abdul Rahim (9330201) Said I. Ismail (11721428) Amel Hassan (14151231) Tasnim Fadl (14152533) Salma M. Khaled (13847737) Bethany Shockley (10799182) Catherine Nasrallah (7504172) Yara Qutteina (14152536) Engi Elmaghraby (14152539) Heba Yasin (14152542) Dima Darwish (14152545) Khalid A. Fakhro (3158862) Radja Badji (14152548) Wadha Al-Muftah (14152551) Nahla Afifi (193245) Asmaa Althani (499903) |
| author_role | author |
| dc.creator.none.fl_str_mv | Hanan F. Abdul Rahim (9330201) Said I. Ismail (11721428) Amel Hassan (14151231) Tasnim Fadl (14152533) Salma M. Khaled (13847737) Bethany Shockley (10799182) Catherine Nasrallah (7504172) Yara Qutteina (14152536) Engi Elmaghraby (14152539) Heba Yasin (14152542) Dima Darwish (14152545) Khalid A. Fakhro (3158862) Radja Badji (14152548) Wadha Al-Muftah (14152551) Nahla Afifi (193245) Asmaa Althani (499903) |
| dc.date.none.fl_str_mv | 2020-07-28T06:00:00Z |
| dc.identifier.none.fl_str_mv | 10.1038/s10038-020-0806-y |
| dc.relation.none.fl_str_mv | https://figshare.com/articles/journal_contribution/Willingness_to_participate_in_genome_testing_a_survey_of_public_attitudes_from_Qatar/21598032 |
| dc.rights.none.fl_str_mv | CC BY 4.0 info:eu-repo/semantics/openAccess |
| dc.subject.none.fl_str_mv | Biological sciences Genetics Biomedical and clinical sciences Clinical sciences Health sciences Public health Genetics (clinical) Genetics Genomics Precision health Population-based genome program Genetic research Whole genome sequencing Precision medicine |
| dc.title.none.fl_str_mv | Willingness to participate in genome testing: a survey of public attitudes from Qatar |
| dc.type.none.fl_str_mv | Text Journal contribution info:eu-repo/semantics/publishedVersion text contribution to journal |
| description | <p dir="ltr">Genomics has the potential to revolutionize medical approaches to disease prevention, diagnosis, and treatment, but it does not come without challenges. The success of a national population-based genome program, like the Qatar Genome Program (QGP), depends on the willingness of citizens to donate samples and take up genomic testing services. This study explores public attitudes of the Qatari population toward genetic testing and toward participating in the QGP. A representative sample of 837 adult Qataris was surveyed in May 2016. Approximately 71% of respondents surveyed reported that they were willing to participate in the activities of the QGP. Willingness to participate was significantly associated with basic literacy in genetics, a family history of genetic diseases, and previous experience with genetic testing through premarital screening. Respondents cited the desire to know more about their health status as the principle motivation for participating, while lack of time and information were reported as the most important barriers. With QGP plans to ramp up the scale of its national operation toward more integration into clinical care settings, it is critical to understand public attitudes and their determinants. The results demonstrate public support but also identify the need for more education and individual counseling that not only provide information on the process, challenges, and benefits of genomic testing, but that also address concerns about information security.</p><h2>Other Information</h2><p dir="ltr">Published in: Journal of Human Genetics<br>License: <a href="https://creativecommons.org/licenses/by/4.0" target="_blank">https://creativecommons.org/licenses/by/4.0</a><br>See article on publisher's website: <a href="http://dx.doi.org/10.1038/s10038-020-0806-y" target="_blank">http://dx.doi.org/10.1038/s10038-020-0806-y<br></a></p><p dir="ltr">Additional institutions affiliated with: Weill Cornell Medicine - Qatar and Qatar University Health - QU</p> |
| eu_rights_str_mv | openAccess |
| id | Manara2_09b8c446ebb263eecb76ef9bb9367507 |
| identifier_str_mv | 10.1038/s10038-020-0806-y |
| network_acronym_str | Manara2 |
| network_name_str | Manara2 |
| oai_identifier_str | oai:figshare.com:article/21598032 |
| publishDate | 2020 |
| repository.mail.fl_str_mv | |
| repository.name.fl_str_mv | |
| repository_id_str | |
| rights_invalid_str_mv | CC BY 4.0 |
| spelling | Willingness to participate in genome testing: a survey of public attitudes from QatarHanan F. Abdul Rahim (9330201)Said I. Ismail (11721428)Amel Hassan (14151231)Tasnim Fadl (14152533)Salma M. Khaled (13847737)Bethany Shockley (10799182)Catherine Nasrallah (7504172)Yara Qutteina (14152536)Engi Elmaghraby (14152539)Heba Yasin (14152542)Dima Darwish (14152545)Khalid A. Fakhro (3158862)Radja Badji (14152548)Wadha Al-Muftah (14152551)Nahla Afifi (193245)Asmaa Althani (499903)Biological sciencesGeneticsBiomedical and clinical sciencesClinical sciencesHealth sciencesPublic healthGenetics (clinical)GeneticsGenomicsPrecision healthPopulation-based genome programGenetic researchWhole genome sequencingPrecision medicine<p dir="ltr">Genomics has the potential to revolutionize medical approaches to disease prevention, diagnosis, and treatment, but it does not come without challenges. The success of a national population-based genome program, like the Qatar Genome Program (QGP), depends on the willingness of citizens to donate samples and take up genomic testing services. This study explores public attitudes of the Qatari population toward genetic testing and toward participating in the QGP. A representative sample of 837 adult Qataris was surveyed in May 2016. Approximately 71% of respondents surveyed reported that they were willing to participate in the activities of the QGP. Willingness to participate was significantly associated with basic literacy in genetics, a family history of genetic diseases, and previous experience with genetic testing through premarital screening. Respondents cited the desire to know more about their health status as the principle motivation for participating, while lack of time and information were reported as the most important barriers. With QGP plans to ramp up the scale of its national operation toward more integration into clinical care settings, it is critical to understand public attitudes and their determinants. The results demonstrate public support but also identify the need for more education and individual counseling that not only provide information on the process, challenges, and benefits of genomic testing, but that also address concerns about information security.</p><h2>Other Information</h2><p dir="ltr">Published in: Journal of Human Genetics<br>License: <a href="https://creativecommons.org/licenses/by/4.0" target="_blank">https://creativecommons.org/licenses/by/4.0</a><br>See article on publisher's website: <a href="http://dx.doi.org/10.1038/s10038-020-0806-y" target="_blank">http://dx.doi.org/10.1038/s10038-020-0806-y<br></a></p><p dir="ltr">Additional institutions affiliated with: Weill Cornell Medicine - Qatar and Qatar University Health - QU</p>2020-07-28T06:00:00ZTextJournal contributioninfo:eu-repo/semantics/publishedVersiontextcontribution to journal10.1038/s10038-020-0806-yhttps://figshare.com/articles/journal_contribution/Willingness_to_participate_in_genome_testing_a_survey_of_public_attitudes_from_Qatar/21598032CC BY 4.0info:eu-repo/semantics/openAccessoai:figshare.com:article/215980322020-07-28T06:00:00Z |
| spellingShingle | Willingness to participate in genome testing: a survey of public attitudes from Qatar Hanan F. Abdul Rahim (9330201) Biological sciences Genetics Biomedical and clinical sciences Clinical sciences Health sciences Public health Genetics (clinical) Genetics Genomics Precision health Population-based genome program Genetic research Whole genome sequencing Precision medicine |
| status_str | publishedVersion |
| title | Willingness to participate in genome testing: a survey of public attitudes from Qatar |
| title_full | Willingness to participate in genome testing: a survey of public attitudes from Qatar |
| title_fullStr | Willingness to participate in genome testing: a survey of public attitudes from Qatar |
| title_full_unstemmed | Willingness to participate in genome testing: a survey of public attitudes from Qatar |
| title_short | Willingness to participate in genome testing: a survey of public attitudes from Qatar |
| title_sort | Willingness to participate in genome testing: a survey of public attitudes from Qatar |
| topic | Biological sciences Genetics Biomedical and clinical sciences Clinical sciences Health sciences Public health Genetics (clinical) Genetics Genomics Precision health Population-based genome program Genetic research Whole genome sequencing Precision medicine |