公共卫生遗传素养的社区合作:为公平基因组学研究和实践共同设计教育资源的方法。

IF 1.5 4区 医学 Q4 GENETICS & HEREDITY
Public Health Genomics Pub Date : 2025-01-01 Epub Date: 2024-12-19 DOI:10.1159/000543227
Juhi Salunke, Grace Byfield, Sabrina N Powell, Daniel F Torres, Grace Leon-Lozano, Jahnelle Jackson, Andreas K Orphanides, Jonathan Shaw, Thomas Owens, Jonathan S Berg, Elizabeth Branch, Lennin Caro, Stefanija Giric, Julianne M O'Daniel, Bradford C Powell, Ken Ray, Carla Robinson, Samantha Schilling, Nicole Shaw, Erin Song, Margaret Waltz, Megan C Roberts, Ann Katherine M Foreman, Kimberly Foss, Laura V Milko
{"title":"公共卫生遗传素养的社区合作:为公平基因组学研究和实践共同设计教育资源的方法。","authors":"Juhi Salunke, Grace Byfield, Sabrina N Powell, Daniel F Torres, Grace Leon-Lozano, Jahnelle Jackson, Andreas K Orphanides, Jonathan Shaw, Thomas Owens, Jonathan S Berg, Elizabeth Branch, Lennin Caro, Stefanija Giric, Julianne M O'Daniel, Bradford C Powell, Ken Ray, Carla Robinson, Samantha Schilling, Nicole Shaw, Erin Song, Margaret Waltz, Megan C Roberts, Ann Katherine M Foreman, Kimberly Foss, Laura V Milko","doi":"10.1159/000543227","DOIUrl":null,"url":null,"abstract":"<p><strong>Introduction: </strong>Unequal representation in genetic and genomic research is due to various factors including historically inequitable and unjust institutional research practices, potential mistrust of biomedical research among underrepresented populations, and lack of access to or awareness of research opportunities. Facilitating sustainable dialogue between diverse communities and genetic researchers can cultivate trusting, bidirectional relationships, potentially encouraging greater participation in research. Herein, we describe the co-creation of public health educational materials and dissemination plans using an approach designed to address inequities and foster community dialogue.</p><p><strong>Methods: </strong>In this Methods paper, we describe the iterative co-creation of Genetics and Genomics educational modules by genetics clinicians, researchers, and community members. The goal of these modules is to enhance genetic literacy of the lay population to facilitate informed decision-making regarding genetic research and health services. We used Designing for Dissemination and Sustainability, grounded in Dissemination and Implementation science, and its Fit to Context process framework to guide the process. This approach ensures that the public health context and writing for a diverse audience are considered throughout the modules' development.</p><p><strong>Conclusion: </strong>This article offers an evidence-based template for adoption or adaptation by other community-engaged groups, aimed at bolstering equity and sustainability in the development of health care interventions and with an emphasis on accessible public health literacy. The co-creation by researchers and community members of both materials and dissemination plans may improve the cultural appropriateness and relevance of public health genetics campaigns. Ongoing research is needed to assess the impact of this approach on receptiveness and participation.</p>","PeriodicalId":49650,"journal":{"name":"Public Health Genomics","volume":"28 1","pages":"66-84"},"PeriodicalIF":1.5000,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11936475/pdf/","citationCount":"0","resultStr":"{\"title\":\"Community Collaboration in Public Health Genetic Literacy: Methods for Co-Designing Educational Resources for Equitable Genomics Research and Practice.\",\"authors\":\"Juhi Salunke, Grace Byfield, Sabrina N Powell, Daniel F Torres, Grace Leon-Lozano, Jahnelle Jackson, Andreas K Orphanides, Jonathan Shaw, Thomas Owens, Jonathan S Berg, Elizabeth Branch, Lennin Caro, Stefanija Giric, Julianne M O'Daniel, Bradford C Powell, Ken Ray, Carla Robinson, Samantha Schilling, Nicole Shaw, Erin Song, Margaret Waltz, Megan C Roberts, Ann Katherine M Foreman, Kimberly Foss, Laura V Milko\",\"doi\":\"10.1159/000543227\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Introduction: </strong>Unequal representation in genetic and genomic research is due to various factors including historically inequitable and unjust institutional research practices, potential mistrust of biomedical research among underrepresented populations, and lack of access to or awareness of research opportunities. Facilitating sustainable dialogue between diverse communities and genetic researchers can cultivate trusting, bidirectional relationships, potentially encouraging greater participation in research. Herein, we describe the co-creation of public health educational materials and dissemination plans using an approach designed to address inequities and foster community dialogue.</p><p><strong>Methods: </strong>In this Methods paper, we describe the iterative co-creation of Genetics and Genomics educational modules by genetics clinicians, researchers, and community members. The goal of these modules is to enhance genetic literacy of the lay population to facilitate informed decision-making regarding genetic research and health services. We used Designing for Dissemination and Sustainability, grounded in Dissemination and Implementation science, and its Fit to Context process framework to guide the process. This approach ensures that the public health context and writing for a diverse audience are considered throughout the modules' development.</p><p><strong>Conclusion: </strong>This article offers an evidence-based template for adoption or adaptation by other community-engaged groups, aimed at bolstering equity and sustainability in the development of health care interventions and with an emphasis on accessible public health literacy. The co-creation by researchers and community members of both materials and dissemination plans may improve the cultural appropriateness and relevance of public health genetics campaigns. Ongoing research is needed to assess the impact of this approach on receptiveness and participation.</p>\",\"PeriodicalId\":49650,\"journal\":{\"name\":\"Public Health Genomics\",\"volume\":\"28 1\",\"pages\":\"66-84\"},\"PeriodicalIF\":1.5000,\"publicationDate\":\"2025-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11936475/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Public Health Genomics\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1159/000543227\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/12/19 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q4\",\"JCRName\":\"GENETICS & HEREDITY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Public Health Genomics","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1159/000543227","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/12/19 0:00:00","PubModel":"Epub","JCR":"Q4","JCRName":"GENETICS & HEREDITY","Score":null,"Total":0}
引用次数: 0

摘要

遗传和基因组研究中代表性不平等是由于各种因素造成的,包括历史上不公平和不公正的机构研究实践,代表性不足的人群对生物医学研究的潜在不信任,以及缺乏获得或意识到研究机会。促进不同社区和基因研究人员之间的可持续对话可以培养信任的双向关系,从而有可能鼓励更多地参与研究。在此,我们描述了公共卫生教育材料和传播计划的共同创建,使用旨在解决不平等和促进社区对话的方法。方法:在本文中,我们描述了遗传学临床医生、研究人员和社区成员共同创建遗传学和基因组学教育模块的迭代过程。这些模块的目标是提高非专业人口的遗传知识,以促进有关遗传研究和保健服务的知情决策。我们使用了以传播和实施科学为基础的传播和可持续性设计,以及其适合情境的过程框架来指导这一过程。这种方法确保在整个模块的开发过程中考虑到公共卫生背景和面向不同受众的写作。结论:本文提供了一个以证据为基础的模板,供其他社区参与团体采用或调整,旨在加强卫生保健干预措施发展的公平性和可持续性,并强调可获得的公共卫生素养。研究人员和社区成员共同创造材料和传播计划,可能会提高公共卫生遗传学运动的文化适宜性和相关性。需要进行研究来评估这种方法对接受和参与的影响。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Community Collaboration in Public Health Genetic Literacy: Methods for Co-Designing Educational Resources for Equitable Genomics Research and Practice.

Introduction: Unequal representation in genetic and genomic research is due to various factors including historically inequitable and unjust institutional research practices, potential mistrust of biomedical research among underrepresented populations, and lack of access to or awareness of research opportunities. Facilitating sustainable dialogue between diverse communities and genetic researchers can cultivate trusting, bidirectional relationships, potentially encouraging greater participation in research. Herein, we describe the co-creation of public health educational materials and dissemination plans using an approach designed to address inequities and foster community dialogue.

Methods: In this Methods paper, we describe the iterative co-creation of Genetics and Genomics educational modules by genetics clinicians, researchers, and community members. The goal of these modules is to enhance genetic literacy of the lay population to facilitate informed decision-making regarding genetic research and health services. We used Designing for Dissemination and Sustainability, grounded in Dissemination and Implementation science, and its Fit to Context process framework to guide the process. This approach ensures that the public health context and writing for a diverse audience are considered throughout the modules' development.

Conclusion: This article offers an evidence-based template for adoption or adaptation by other community-engaged groups, aimed at bolstering equity and sustainability in the development of health care interventions and with an emphasis on accessible public health literacy. The co-creation by researchers and community members of both materials and dissemination plans may improve the cultural appropriateness and relevance of public health genetics campaigns. Ongoing research is needed to assess the impact of this approach on receptiveness and participation.

求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
来源期刊
Public Health Genomics
Public Health Genomics 医学-公共卫生、环境卫生与职业卫生
CiteScore
2.90
自引率
0.00%
发文量
14
审稿时长
>12 weeks
期刊介绍: ''Public Health Genomics'' is the leading international journal focusing on the timely translation of genome-based knowledge and technologies into public health, health policies, and healthcare as a whole. This peer-reviewed journal is a bimonthly forum featuring original papers, reviews, short communications, and policy statements. It is supplemented by topic-specific issues providing a comprehensive, holistic and ''all-inclusive'' picture of the chosen subject. Multidisciplinary in scope, it combines theoretical and empirical work from a range of disciplines, notably public health, molecular and medical sciences, the humanities and social sciences. In so doing, it also takes into account rapid scientific advances from fields such as systems biology, microbiomics, epigenomics or information and communication technologies as well as the hight potential of ''big data'' for public health.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:604180095
Book学术官方微信