Dataset Information

Willingness to participate in genome testing: a survey of public attitudes from Qatar.

ABSTRACT: 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.

SUBMITTER: Abdul Rahim HF

PROVIDER: S-EPMC7605429 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

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Willingness to participate in genome testing: a survey of public attitudes from Qatar.

Abdul Rahim Hanan F HF Ismail Said I SI Hassan Amel A Fadl Tasnim T Khaled Salma M SM Shockley Bethany B Nasrallah Catherine C Qutteina Yara Y Elmaghraby Engi E Yasin Heba H Darwish Dima D Fakhro Khalid A KA Badji Radja R Al-Muftah Wadha W Afifi Nahla N Althani Asmaa A

Journal of human genetics 20200728 12

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 adu ...[more]

PMID: 32724056

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Project description:ObjectiveThe objective of this study was to gain insights into the attitudes of men with lower urinary tract symptoms towards deprescribing alpha-blockers and to assess their willingness to participate in a planned discontinuation trial.MethodsThis was a cross-sectional questionnaire study. Men aged 30 years and older with lower urinary tract symptoms, who were first prescribed an alpha-blocker in 2015 or 2016, were selected from a population-based prescription database. We recorded lower urinary tract symptom severity (e.g., International Prostate Symptom Score and Overactive Bladder questionnaire) and patient characteristics (e.g., comorbidity and polypharmacy). The linguistically validated Dutch version of the revised Patients' Attitudes Towards Deprescribing (rPATD) questionnaire was also used, to which we added ten specific questions on attitudes towards the deprescribing of alpha-blockers. Information about a future discontinuation trial on alpha-blockers was then provided and participants were asked to indicate if they would participate. We explored the explanatory factors for the willingness to participate by logistic regression analyses.ResultsOf the 1380 patients in the database, 421 were using an alpha-blocker, and 195 completed the questionnaire. Of these, 16 men were excluded because of indwelling catheter use or unknown indication. The mean age of the 179 participants was 69.4 (standard deviation 9.2) years. Most men were satisfied with their current therapy, but almost all (93%) were willing to stop the medicine at the request of a doctor. Therefore, most men (61%) were willing to participate in the proposed alpha-blocker discontinuation trial. Willingness to stop therapy was affected by patients' perceptions of the appropriateness of alpha-blocker therapy and concerns about stopping that therapy.ConclusionsAlthough men who use alpha-blockers are generally satisfied with their current therapy, most will participate in a discontinuation trial.

Project description:BackgroundThe World Health Organization (WHO) recommends that the role of pharmacists in low-income settings be expanded to address the increasing complexity of HIV antiretroviral (ARV) and co-infection drug regimens. However, in many such settings including in India, many pharmacists and pharmacy workers are often neither well trained nor aware of the intricacies of HIV treatment. The aims of our study were; to determine the availability of ARVs, provision of ARVs, knowledge about ARVs, attitudes towards HIV-infected persons and self-perceived need for training among community-based pharmacies in an urban area of India.MethodsWe performed a survey of randomly selected, community-based pharmacies located in Pune, India, in 2004-2005 to determine the availability of ARVs at these pharmacies, how they were providing ARVs and their self-perceived need for training. We also assessed knowledge, attitudes and perceptions on HIV and ARVs and factors associated with stocking ARVs.ResultsOf 207 pharmacies included in the survey, 200 (96.6%) were single, private establishments. Seventy-three (35.3%) pharmacies stocked ARVs and 38 (18.4%) ordered ARVs upon request. The reported median number of ARV pills that patients bought at one time was 30, a two week supply of ARVs (range: 3-240 pills). Six (2.9%) pharmacy respondents reported selling non-allopathic medicines (i.e. Ayurvedic, homeopathy) for HIV. Ninety (44.2%) pharmacy respondents knew that ARVs cannot cure HIV, with those stocking ARVs being more likely to respond correctly (60.3% vs. 34.8%, p = 0.001). Respondents of pharmacies which stocked ARVs were also more likely to believe it was a professional obligation to provide medications to HIV-infected persons (91.8% vs. 78.8%, p = 0.007) but they were also more likely to believe that HIV-infected persons are unable to adhere to their medicines (79.5% vs. 40.9%, p < 0.01). Knowledge of the most common side effects of nevirapine, abnormal liver enzyme profile and skin rash, was reported correctly by 8 (3.9%) and 23 (11.1%) respondents, respectively. Seven (3.4%) respondents reported that they had received special training on HIV, 3 (1.5%) reported receipt of special training on ART and 167 (80.7%) reported that they believed that pharmacy staff should get special training on ART.ConclusionThere is a high willingness to participate in HIV management among community-based pharmacies but there is a tremendous need for training on HIV therapies. Furthermore, stigmatizing attitudes towards HIV-infected persons persist and interventions to reduce stigma are needed, particularly among those that stock ARVs.

Project description:BackgroundBiobanks/biorepositories are created to collect biospecimens for therapeutic and research uses. The success of the banking concept depends predominantly on the public's understanding and desire to contribute, which triggers several social, cultural, and ethical implications. The aim of this study is (1) to assess the willingness among adults attending outpatient clinics at King Abdulaziz Medical City to donate dental tissue samples to a biorepository for research purposes, (2) to identify the significant predictors for positive attitudes and willingness to donate dental bio-specimens.MethodologyThis is a cross-sectional study that targeted 401 adult outpatients attending King Abdulaziz Medical City in Riyadh, Saudi Arabia. The questionnaire focused on three main parts: demographic and personal characteristics, and previous experience regarding biorepositories (part I), knowledge about dental biorepositories (part II), and willingness and attitudes towards donating dental biospecimens (part III). Data collected were analyzed using the statistical program SAS (version 9.4) with 0.05 level of significance to determine the willingness of donating tissue to biobanks for biomedical research purposes, measure knowledge and attitude about biobanking, find the association between the assessed variables, and identify significant predictors of positive attitude to donate dental biospecimens.Results66% of the participants were willing to donate dental biospecimens, however only 33.9% showed good level of knowledge. Despite the notable lack of knowledge, 54% respondents had favorable attitude towards donating dental biospecimens, and only 17% were negative while the remaining 29% were neutral. Previous involvement in medical research, previous blood testing or donation, female gender, higher education level, employment in a medical facility, and higher monthly income variables were found to be significantly associated with higher willingness to donate dental biospecimens.ConclusionAlthough the majority of the participants exhibited lack of knowledge about dental biorepositories, they showed high willingness and good attitude towards donating dental biospecimens. This favorable attitude is, in turn, encouraging for the future establishment of dental biorepositories in Saudi Arabia. Six factors were significantly associated with the willingness to donate dental biospecimens, out of these, female gender, previous blood testing/donation, previous involvement in medical research were found to be strong predictors.

Dataset Information

Willingness to participate in genome testing: a survey of public attitudes from Qatar.

Publications

Willingness to participate in genome testing: a survey of public attitudes from Qatar.

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