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本文引用的文献

1
Assessment of genetic polymorphisms associated with hyperuricemia or gout in the Hmong.对苗族人群中与高尿酸血症或痛风相关的基因多态性的评估。
Per Med. 2016 Sep;13(5):429-440. doi: 10.2217/pme-2016-0021. Epub 2016 Aug 1.
2
Leaves imitate trees: Minnesota Hmong concepts of heredity and applications to genomics research.树叶模仿树木:明尼苏达苗族的遗传观念及其在基因组学研究中的应用
J Community Genet. 2017 Jan;8(1):23-34. doi: 10.1007/s12687-016-0284-2. Epub 2016 Nov 7.
3
Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.向参与者及家属反馈基因研究结果:机构审查委员会的观点与职责
J Law Med Ethics. 2015 Fall;43(3):502-13. doi: 10.1111/jlme.12292.
4
Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide.绘制转化基因组学的伦理图谱:定位结果反馈并跨越研究与临床的鸿沟
J Law Med Ethics. 2015 Fall;43(3):486-501. doi: 10.1111/jlme.12291.
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Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland.确定吸引社区成员并建立对生物样本库信任的方法的优先级:对马里兰大学门诊机构内成年人态度和意见的调查
J Pers Med. 2015 Jul 28;5(3):264-79. doi: 10.3390/jpm5030264.
6
Using community-based participatory research principles to develop more understandable recruitment and informed consent documents in genomic research.运用基于社区的参与性研究原则,在基因组研究中制定更易于理解的招募和知情同意文件。
PLoS One. 2015 May 4;10(5):e0125466. doi: 10.1371/journal.pone.0125466. eCollection 2015.
7
Community dissemination and genetic research: moving beyond results reporting.社区传播与基因研究:超越结果报告
Am J Med Genet A. 2015 Jul;167(7):1542-50. doi: 10.1002/ajmg.a.37028. Epub 2015 Apr 21.
8
An implementation framework for the feedback of individual research results and incidental findings in research.一项关于研究中个体研究结果及偶发发现反馈的实施框架。
BMC Med Ethics. 2014 Dec 23;15:88. doi: 10.1186/1472-6939-15-88.
9
Researchers' views on informed consent for return of secondary results in genomic research.研究人员对基因组研究中二级结果反馈的知情同意的看法。
Genet Med. 2015 Aug;17(8):644-50. doi: 10.1038/gim.2014.163. Epub 2014 Dec 11.
10
The First Amendment Right to Speak About the Human Genome.关于人类基因组言论的第一修正案权利。
Univ Pa J Const Law. 2014 Feb 1;16(3):549-636.

让苗族成年人参与基因组和药物基因组学研究:采用基于社区的参与性研究方法,以减少基因组知识方面的健康差距。

Engaging Hmong adults in genomic and pharmacogenomic research: Toward reducing health disparities in genomic knowledge using a community-based participatory research approach.

作者信息

Culhane-Pera Kathleen A, Straka Robert J, Moua MaiKia, Roman Youssef, Vue Pachia, Xiaaj Kang, Lo May Xia, Lor Mai

机构信息

West Side Community Health Services, 153 Cesar Chavez St, Saint Paul, MN, 55107, USA.

Department of Experimental and Clinical Pharmacology, College of Pharmacy University of Minnesota, 7-115 Weaver-Densford Hall, 308 Harvard St SE, Minneapolis, MN, 55455, USA.

出版信息

J Community Genet. 2017 Apr;8(2):117-125. doi: 10.1007/s12687-017-0292-x. Epub 2017 Jan 10.

DOI:10.1007/s12687-017-0292-x
PMID:28074382
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5386914/
Abstract

Advancing precision medicine relies in part on examining populations that may exhibit unique genetic variants that impact clinical outcomes. Failure to include diverse populations in genomic-based research represents a health disparity. We implemented a community-based participatory research (CBPR) process with the Hmong community in Minnesota, who were refugees from Laos, in order to assess the feasibility of conducting genomic and pharmacogenomic-based research for genetic variants that are relevant to the Hmong community. Our Hmong Genomics Board, consisting of Hmong and non-Hmong professionals, used CBPR principles and built on previous formative research to create and implement culturally and linguistically appropriate informed consent processes for Hmong people at six community venues. The Board chose genetic variants for diabetes risk and warfarin response as relevant to the community. The Institutional Review Board approved aggregate but not individual return of results. Two hundred thirty-seven Hmong participants with mean (range) age of 30.2 (18-81) years and diverse levels of education (22% without and 75% with high-school education) provided saliva for genetic (DNA) analyses. Eighty-five percent of participants agreed to store DNA for future analyses, 82% agreed to share DNA with other researchers, and 78% agreed to be contacted for future studies. Twenty-five elders refused to participate because they wanted individual results. Aggregate results were shared with all participants. This CBPR approach proved highly successful to obtain informed consent and recruit a sample from the Hmong community for a genomic and pharmacogenomic study. Investment in the CBPR process may prove successful to address the gap of genomic information in under-represented communities.

摘要

推进精准医学在一定程度上依赖于对可能表现出影响临床结果的独特基因变异的人群进行研究。在基于基因组的研究中未能纳入多样化的人群代表了一种健康差异。我们与明尼苏达州的苗族社区(他们是来自老挝的难民)开展了基于社区的参与性研究(CBPR),以评估针对与苗族社区相关的基因变异开展基于基因组和药物基因组学研究的可行性。我们的苗族基因组学委员会由苗族和非苗族专业人员组成,运用CBPR原则,并基于之前的形成性研究,为六个社区场所的苗族人群创建并实施了文化和语言上合适的知情同意程序。委员会选择了与该社区相关的糖尿病风险和华法林反应的基因变异。机构审查委员会批准了汇总但非个体的结果反馈。237名苗族参与者,平均(范围)年龄为30.2(18 - 81)岁,教育程度各异(22%未接受高中教育,75%接受高中教育),提供了唾液用于基因(DNA)分析。85%的参与者同意储存DNA以供未来分析,82%同意与其他研究人员共享DNA,78%同意在未来研究中被联系。25名年长者拒绝参与,因为他们想要个体结果。汇总结果已与所有参与者分享。这种CBPR方法在获得知情同意以及从苗族社区招募样本进行基因组和药物基因组学研究方面被证明非常成功。对CBPR过程的投入可能会成功解决代表性不足社区的基因组信息缺口问题。