英国南亚血统参与者对药物基因组学临床实施和研究的看法:专题分析。

IF 2.9 3区 医学 Q2 GENETICS & HEREDITY Pharmacogenomics Journal Pub Date : 2023-11-01 DOI:10.1038/s41397-023-00317-8
Emma F. Magavern, Faiza Durrani, Mehru Raza, Robin Lerner, Mohammed Riadul Islam, Genes & Health Research Team, Megan Clinch, Mark J. Caulfield
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摘要

背景:南亚血统人群在基因组研究和治疗试验中的代表性不足。英国南亚人患有多种疾病,导致多药治疗。我们的目的是阐明英国南亚血统社区对药物基因组实施的看法,并共享药物基因组临床数据进行研究。方法:进行四个焦点小组(每个小组9-12名参与者)。两组为混合性别,一组仅为男性,一组为女性。与会者可使用乌尔都语和孟加拉语进行同声传译。对焦点小组进行了记录,并进行了删节转录和专题分析。结果:共有42名参与者,其中64%为女性。26%的人出生在英国或欧洲。52%出生在孟加拉国,17%出生在巴基斯坦。36%的人接受过大学教育。药物基因组学的实施被认为对个人有益,但也会给资源有限的系统带来负担过重的风险。药物基因组研究被认为对社区有益,对数据隐私和滥用表示担忧。如果研究人员没有经济利益,那么数据共享是可取的,而且利益是共享的。信任是临床实施和研究可接受性的关键条件。信任与药物依从性有关。教育、外联和沟通促进信任。结论(研究的意义和影响):药物基因组学的实施与适当的教育和沟通有可能增强信任,并有助于提高药物依从性。信任推动数据共享,这将增强研究中的代表性。在科学证据库中的代表性可以周期性地增强信任和遵守。
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British South Asian ancestry participants views of pharmacogenomics clinical implementation and research: a thematic analysis
South Asian ancestry populations are underrepresented in genomic studies and therapeutics trials. British South Asians suffer from multi-morbidity leading to polypharmacy. Our objective was to elucidate British South Asian ancestry community perspectives on pharmacogenomic implementation and sharing pharmacogenomic clinical data for research. Four focus groups were conducted (9–12 participants in each). Two groups were mixed gender, while one group was male only and one was female only. Simultaneous interpretation was available to participants in Urdu and Bengali. Focus groups were recorded and abridged transcription and thematic analysis were undertaken. There were 42 participants, 64% female. 26% were born in the UK or Europe. 52% were born in Bangladesh and 17% in Pakistan. 36% reported university level education. Implementation of pharmacogenomics was perceived to be beneficial to individuals but pose a risk of overburdening resource limited systems. Pharmacogenomic research was perceived to be beneficial to the community, with concerns about data privacy and misuse. Data sharing was desirable if the researchers did not have a financial stake, and benefits would be shared. Trust was the key condition for the acceptability of both clinical implementation and research. Trust was linked with medication compliance. Education, outreach, and communication facilitate trust. Pharmacogenomics implementation with appropriate education and communication has the potential to enhance trust and contribute to increased medication compliance. Trust drives data sharing, which would enable enhanced representation in research. Representation in scientific evidence base could cyclically enhance trust and compliance.
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来源期刊
Pharmacogenomics Journal
Pharmacogenomics Journal 医学-药学
CiteScore
7.20
自引率
0.00%
发文量
35
审稿时长
6-12 weeks
期刊介绍: The Pharmacogenomics Journal is a print and electronic journal, which is dedicated to the rapid publication of original research on pharmacogenomics and its clinical applications. Key areas of coverage include: Personalized medicine Effects of genetic variability on drug toxicity and efficacy Identification and functional characterization of polymorphisms relevant to drug action Pharmacodynamic and pharmacokinetic variations and drug efficacy Integration of new developments in the genome project and proteomics into clinical medicine, pharmacology, and therapeutics Clinical applications of genomic science Identification of novel genomic targets for drug development Potential benefits of pharmacogenomics.
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