公民基因组学素养：领域内多学科专家的德尔菲调查。

Citizens' Literacy in Genomics: A Delphi Survey of Multidisciplinary Experts in the Field.

机构信息

Section of Hygiene, University Department of Life Sciences and Public Health, Università Cattolica del Sacro Cuore, 00168 Rome, Italy.

Department of Medical and Surgical Sciences, University of Bologna, 40126 Bologna, Italy.

出版信息

Genes (Basel). 2022 Mar 11;13(3):498. doi: 10.3390/genes13030498.

DOI:10.3390/genes13030498

PMID:35328052

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8949598/

Abstract

INTRODUCTION

Citizens' literacy in the field of genomics represents one of the cornerstones of proper implementation of genomics in healthcare services. In order to identify the most effective tools by which to elevate citizens' literacy in genomics, we conducted a survey among the group of multidisciplinary experts within the Italian Network of Genomics in Public Health (GENISAP).

METHODS

Two rounds of Delphi surveys were carried out in order to identify the main topics, tools, settings, and healthcare professionals' backgrounds that might usefully be included in citizens' training initiatives in genomics. To this end, we distributed a questionnaire with 39 items that are scored on a 5-point scale.

RESULTS

By the end of the Delphi process, 43 items were selected (19 for the topics, 6 for the tools, 9 for settings, and 9 for the healthcare professionals' backgrounds). Genomic tests and counseling were among the main topics included, while in terms of tools, face-to-face discussion with healthcare professionals was prioritized by the experts. Among the most appropriate platforms, the group suggested internet/social media and healthcare settings. The healthcare professional considered to have the most relevant role in terms of citizens' education was a medical doctor with a specialism in clinical genetics.

DISCUSSION

Our study attempted to identify the main characteristics that could guide the design of interventions to promote public literacy regarding the field of genomics. Specifically, we have identified the main topics to be included in an educational program for citizens, the tools and settings to consider when providing educational initiatives on genomics, and the healthcare professionals who need to be involved in these initiatives. Therefore, the results of our study provide the necessary basis for the realization of new training initiatives on genomics to be proposed and offered to citizens, these initiatives to be implemented at a national and international level for achieving the transformational change in health systems that is required by the precision health approach.

摘要

简介

公民在基因组学领域的素养是将基因组学成功应用于医疗保健服务的基石之一。为了确定提高公民基因组学素养的最有效工具，我们在意大利公共卫生基因组学网络（GENISAP）的多学科专家小组中进行了一项调查。

方法

我们进行了两轮德尔菲调查，以确定在基因组学领域的公民培训计划中可能有用的主要主题、工具、设置和医疗保健专业人员背景。为此，我们分发了一份包含 39 个项目的问卷，这些项目在 5 分制上进行评分。

结果

通过德尔菲流程，选择了 43 个项目（19 个主题，6 个工具，9 个设置，9 个医疗保健专业人员背景）。基因组测试和咨询是纳入的主要主题之一，而在工具方面，专家们优先考虑与医疗保健专业人员进行面对面讨论。在最合适的平台中，该小组建议使用互联网/社交媒体和医疗保健环境。在公民教育方面，最相关的医疗保健专业人员被认为是具有临床遗传学专业知识的医生。

讨论

我们的研究试图确定指导设计干预措施以提高公众对基因组学领域的素养的主要特征。具体而言，我们确定了公民教育计划中应包括的主要主题、提供基因组学教育举措时应考虑的工具和设置，以及需要参与这些举措的医疗保健专业人员。因此，我们的研究结果为在全国和国际层面上提出和提供新的基因组学培训计划提供了必要的基础，以实现精准健康方法所要求的医疗保健系统的变革性转变。