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美国不同种族对基因信息使用和参与基因研究态度的社会文化差异:对精准医学的启示

Sociocultural variation in attitudes toward use of genetic information and participation in genetic research by race in the United States: implications for precision medicine.

作者信息

Dye Timothy, Li Dongmei, Demment Margaret, Groth Susan, Fernandez Diana, Dozier Ann, Chang Jack

机构信息

Clinical and Translational Science Institute, University of Rochester, Rochester, NY, USA

Clinical and Translational Science Institute, University of Rochester, Rochester, NY, USA.

出版信息

J Am Med Inform Assoc. 2016 Jul;23(4):782-6. doi: 10.1093/jamia/ocv214. Epub 2016 Mar 16.

DOI:10.1093/jamia/ocv214
PMID:26984047
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4926739/
Abstract

BACKGROUND

"Precision medicine" (PM) requires researchers to identify actionable genetic risks and for clinicians to interpret genetic testing results to patients. Whether PM will equally benefit all populations or exacerbate existing disparities is uncertain.

METHODS

We ascertained attitudes toward genetic testing and genetic research by race in the United States using the online Amazon mTurk US workforce (n = 403 White; n = 56 African American (AA)). Generalized linear models were used to test differences in beliefs and preferences by race, adjusting for sociodemographics and prior genetic experience.

RESULTS

AA were less likely than White to believe that genetic tests should be promoted or made available. Further, AA were less likely to want genetic testing results or to participate in genetic research.

CONCLUSIONS

Important dimensions that underlay PM are not universally accepted by all populations. Without clear attention to concerns, AA communities may not equally benefit from the rapidly-emerging trend in PM-centered research and clinical practice.

摘要

背景

“精准医学”(PM)要求研究人员识别可采取行动的遗传风险,并要求临床医生向患者解释基因检测结果。精准医学是否会使所有人群同等受益,还是会加剧现有的差异,目前尚不确定。

方法

我们通过在线亚马逊土耳其机器人美国劳动力平台,确定了美国不同种族对基因检测和基因研究的态度(n = 403名白人;n = 56名非裔美国人(AA))。使用广义线性模型来检验不同种族在信念和偏好上的差异,并对社会人口统计学和先前的基因经验进行了调整。

结果

非裔美国人比白人更不太可能认为应该推广基因检测或使其可用。此外,非裔美国人不太可能想要基因检测结果或参与基因研究。

结论

精准医学的重要方面并非被所有人群普遍接受。如果不明确关注这些问题,非裔美国人社区可能无法从以精准医学为中心的研究和临床实践的快速发展趋势中同等受益。

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