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通过国家基因组计划提高基因组素养。

Increasing Genomic Literacy Through National Genomic Projects.

作者信息

Zimani Ana Nyasha, Peterlin Borut, Kovanda Anja

机构信息

Clinical Institute of Genomic Medicine, University Medical Centre Ljubljana, Ljubljana, Slovenia.

出版信息

Front Genet. 2021 Aug 12;12:693253. doi: 10.3389/fgene.2021.693253. eCollection 2021.

Abstract

Genomics is an advancing field of medicine, science, ethics, and legislation. Keeping up to date with this challenging discipline requires continuous education and exchange of knowledge between many target groups. Specific challenges in genomic education include tailoring complex topics to diverse audiences ranging from the general public and patients to highly educated professionals. National genomic projects face many of the same challenges and thus offer many opportunities to highlight common educational strategies for improving genomic literacy. We have reviewed 41 current national genomic projects and have identified 16 projects specifically describing their approach to genomic education. The following target groups were included in the educational efforts: the general public (nine projects), patients (six projects), and genomic professionals (16 projects), reflecting the general overall aims of the projects such as determining normal and pathological genomic variation, improving infrastructure, and facilitating personalized medicine. The national genomic projects aim to increase genomic literacy through supplementing existing national education in genomics as well as independent measures specifically tailored to each target group, such as training events, research collaboration, and online resources for healthcare professionals, patients, and patient organizations. This review provides the current state of educational activities within national genomic projects for different target groups and identifies good practices that could contribute to patient empowerment, public engagement, proficient healthcare professionals, and lend support to personalized medicine.

摘要

基因组学是医学、科学、伦理和立法领域中不断发展的学科。要跟上这一具有挑战性的学科发展,需要众多目标群体持续接受教育并交流知识。基因组学教育面临的具体挑战包括针对从普通公众、患者到高学历专业人员等不同受众,调整复杂的主题。国家基因组计划面临许多相同的挑战,因此也提供了很多机会来突出提高基因组素养的常见教育策略。我们审查了41个当前的国家基因组计划,并确定了16个专门描述其基因组学教育方法的计划。这些教育工作涵盖了以下目标群体:普通公众(9个计划)、患者(6个计划)和基因组学专业人员(16个计划),反映了这些计划的总体目标,如确定正常和病理性基因组变异、改善基础设施以及推动个性化医疗。国家基因组计划旨在通过补充现有的国家基因组学教育以及针对每个目标群体专门制定的独立措施来提高基因组素养,这些措施包括培训活动、研究合作以及为医疗保健专业人员、患者和患者组织提供的在线资源。本综述介绍了国家基因组计划针对不同目标群体开展的教育活动的现状,并确定了有助于患者赋权、公众参与、培养专业医疗保健人员以及支持个性化医疗的良好做法。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/85ad/8387713/d52402dc93e3/fgene-12-693253-g001.jpg

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