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Lack Of Diversity In Genomic Databases Is A Barrier To Translating Precision Medicine Research Into Practice.基因组数据库缺乏多样性是将精准医学研究转化为实践的障碍。
Health Aff (Millwood). 2018 May;37(5):780-785. doi: 10.1377/hlthaff.2017.1595.
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Views Of Primary Care Providers On Testing Patients For Genetic Risks For Common Chronic Diseases.初级保健提供者对检测常见慢性疾病遗传风险的看法。
Health Aff (Millwood). 2018 May;37(5):793-800. doi: 10.1377/hlthaff.2017.1548.
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From public health genomics to precision public health: a 20-year journey.从公共卫生基因组学到精准公共卫生:20 年的历程。
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Genomics is failing on diversity.基因组学在多样性方面表现不佳。
Nature. 2016 Oct 13;538(7624):161-164. doi: 10.1038/538161a.
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Racial and Ethnic Disparities in the Quality of Health Care.卫生保健质量中的种族和民族差异。
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7
Precision Lifestyle Medicine: A New Frontier in the Science of Behavior Change and Population Health.精准生活方式医学:行为改变科学与人群健康领域的新前沿。
Am J Prev Med. 2016 Mar;50(3):395-397. doi: 10.1016/j.amepre.2015.09.035. Epub 2015 Dec 2.
8
Impact of Precision Medicine in Diverse Cancers: A Meta-Analysis of Phase II Clinical Trials.精准医学在多种癌症中的影响:一项II期临床试验的荟萃分析
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9
Precision medicine and health disparities: advancing the science of individualizing patient care.精准医学与健康差异:推进个体化患者护理科学
Am J Public Health. 2015 Jul;105 Suppl 3(Suppl 3):S368. doi: 10.2105/AJPH.2015.302755.
10
The precision medicine initiative: a new national effort.精准医学计划:一项新的全国性行动。
JAMA. 2015 Jun 2;313(21):2119-20. doi: 10.1001/jama.2015.3595.

种族/族裔少数群体社区及其服务医师对精准医疗的看法。

Perspectives on Precision Health Among Racial/Ethnic Minority Communities and the Physicians That Serve Them.

作者信息

Rosas Lisa G, Nasrallah Catherine, Park Van Ta, Vasquez Jan J, Duron Ysabel, Garrick Owen, Hattin Riccesha, Cho Mildred, David Sean P, Evans Jill, McClinton-Brown Rhonda, Martin Christopher

机构信息

Department of Epidemiology and Population Health, Stanford University School of Medicine, Palo Alto, CA.

Palo Alto Medical Foundation, Palo Alto, CA.

出版信息

Ethn Dis. 2020 Apr 2;30(Suppl 1):137-148. doi: 10.18865/ed.30.S1.137. eCollection 2020.

DOI:10.18865/ed.30.S1.137
PMID:32269455
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7138446/
Abstract

BACKGROUND

In order for precision health to address health disparities, engagement of diverse racial/ethnic minority communities and the physicians that serve them is critical.

METHODS

A community-based participatory research approach with mixed methods was employed to gain a deeper understanding of precision health research and practice among American Indian, African American, Latino, Chinese, and Vietnamese groups and physicians that serve these communities. A survey assessed demographics and opinions of precision health, genetic testing, and precision health research. Focus groups (n=12) with each racial/ethnic minority group and physicians further explored attitudes about these topics.

RESULTS

One hundred community members (American Indian [n=17], African American [n=13], Chinese [n=17], Latino [n=27], and Vietnamese [n=26]) and 14 physicians completed the survey and participated in the focus groups. Familiarity with precision health was low among community members and high among physicians. Most groups were enthusiastic about the approach, especially if it considered influences on health in addition to genes (eg, environmental, behavioral, social factors). Significant concerns were expressed by African American and American Indian participants about precision health practice and research based on past abuses in biomedical research. In addition, physician and community members shared concerns such as security and confidentiality of genetic information, cost and affordability of genetic tests and precision medicine, discrimination and disparities, distrust of medical and research and pharmaceutical institutions, language barriers, and physician's specialty.

CONCLUSIONS

Engagement of racial/ethnic minority communities and the providers who serve them is important for advancing a precision health approach to addressing health disparities.

摘要

背景

为了让精准医疗解决健康差异问题,让不同的种族/族裔少数群体以及为他们服务的医生参与进来至关重要。

方法

采用基于社区的参与性研究方法并结合多种方式,以更深入地了解美国印第安人、非裔美国人、拉丁裔、华裔和越南裔群体以及为这些社区服务的医生对精准医疗研究和实践的情况。一项调查评估了人口统计学特征以及对精准医疗、基因检测和精准医疗研究的看法。与每个种族/族裔少数群体及医生进行的焦点小组讨论(共12个)进一步探讨了对这些话题的态度。

结果

100名社区成员(美国印第安人[17名]、非裔美国人[13名]、华裔[17名]、拉丁裔[27名]和越南裔[26名])以及14名医生完成了调查并参与了焦点小组讨论。社区成员对精准医疗的熟悉程度较低,而医生的熟悉程度较高。大多数群体对这种方法充满热情,尤其是如果它除了考虑基因之外还考虑对健康的影响(例如环境、行为、社会因素)。非裔美国人和美国印第安人参与者对基于生物医学研究过去的不当行为的精准医疗实践和研究表达了重大担忧。此外,医生和社区成员共同关注的问题包括基因信息的安全性和保密性、基因检测和精准医学的成本及可承受性、歧视和差异、对医疗、研究和制药机构的不信任、语言障碍以及医生的专业领域。

结论

让种族/族裔少数群体以及为他们服务的提供者参与进来,对于推进采用精准医疗方法解决健康差异问题很重要。