Increasing access to individualized medicine: a matched-cohort study examining Latino participant experiences of genomic screening.

Increasing access to individualized medicine: a matched-cohort study examining Latino participant experiences of genomic screening.
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DOI:
10.1038/s41436-020-01079-5
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发表时间:
2021-05
期刊:
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子:
--
通讯作者:
Sharp RR
Sharp RR
中科院分区:
其他
文献类型:
--
作者:
Pacyna JE;Shaibi GQ;Lee A;Byrne JO;Cuellar I;Sutton EJ;Hernandez V;Lindor NM;Singh D;Kullo IJ;Sharp RR

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目前正在进行多项努力,以增加少数族裔参与者参与基因组研究和新形式个体化医疗的机会。这些努力应包括研究少数民族社区的个人如何在不同的医疗保健环境中体验基因组医学,以及他们如何将遗传知识融入他们对医疗保健需求的理解中。作为大型多位点基因组测序研究的一部分,我们对个人进行了调查,以评估他们进行基因组风险评估的决定。参与者包括在亚利桑那州凤凰城的联邦合格健康中心 Mountain Park 健康中心招募的拉丁裔患者,以及在大型学术医疗中心(明尼苏达州罗彻斯特的梅奥诊所)招募的非拉丁裔患者。两组都同意接受个性化的基因组风险评估。队列之间的比较显示,拉丁裔受访者在进行基因组筛查方面的决策冲突程度较低,但在遗传知识方面的得分普遍较低。拉丁裔受访者也更有可能担心基因组信息的滥用,尽管两个群体对基因组风险评估的价值有着相似的看法。我们的结果强调了评估影响少数患者在不同医疗保健环境中参与基因组医学的社会文化因素的重要性。
Multiple efforts are underway to increase the inclusion of racial minority participants in genomic research and new forms of individualized medicine. These efforts should include studies that characterize how individuals from minority communities experience genomic medicine in diverse healthcare settings and how they integrate genetic knowledge into their understandings of healthcare needs. As part of a large, multisite genomic sequencing study, we surveyed individuals to assess their decision to pursue genomic risk evaluation. Participants included Latino patients recruited at Mountain Park Health Center, a Federally Qualified Health Center in Phoenix, AZ, and non-Latino patients recruited at a large academic medical center (Mayo Clinic in Rochester, MN). Both groups agreed to receive individualized genomic risk assessments. Comparisons between cohorts showed that Latino respondents had lower levels of decisional conflict about pursuing genomic screening but generally scored lower on genetic knowledge. Latino respondents were also more likely to have concerns about the misuse of genomic information, despite both groups having similar views about the value of genomic risk evaluation. Our results highlight the importance of evaluating sociocultural factors that influence minority patient engagement with genomic medicine in diverse healthcare settings.
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