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探索非裔美国人社区对基因组医学研究的看法:一项文献综述。

Exploring African American community perspectives about genomic medicine research: A literature review.

作者信息

Hendricks-Sturrup Rachele M, Edgar Lauren M, Johnson-Glover Tracey, Lu Christine Y

机构信息

Department of Population Medicine, Harvard Pilgrim Health Care Institute and Harvard Medical School, Boston, MA, USA.

Southern Nevada Black Nurses Association, Las Vegas, NV, USA.

出版信息

SAGE Open Med. 2020 Jan 29;8:2050312120901740. doi: 10.1177/2050312120901740. eCollection 2020.

Abstract

Genomic medicine research is an important topic in the African American health care community. African American nurses and advance practice nursing professionals are poised to encourage and educate themselves and their communities about the importance of diversity in genomic medicine research. The Southern Nevada Black Nurses Association, a chapter within the larger National Black Nurses Association's, recently engaged in the National Institutes of Health research program to educate their members about formularies and other treatment modalities that could clinically benefit African-Americans and other populations of color. During this event, the Southern Nevada Black Nurses Association discovered that National Black Nurses Association members held ethical, legal, and social concerns about engaging in genomic medicine research that align with respective concerns reported in the literature. In this review, we discuss National Black Nurses Association concerns and how they relate to qualitative themes emerging from the literature and a recent National Academies of Science, Engineering, and Medicine event on disparities in access to genomic medicine. We conclude that researchers should engage with African American health community leaders to effectively engage the African American community in genomic medicine research and help ensure that genomic medicine does not exacerbate existing health disparities.

摘要

基因组医学研究是美国非裔医疗保健社区的一个重要话题。美国非裔护士和高级执业护理专业人员准备好鼓励并教育自己及所在社区认识到基因组医学研究中多样性的重要性。内华达州南部黑人护士协会是更大的全国黑人护士协会的一个分会,最近参与了美国国立卫生研究院的研究项目,以教育其成员有关可能对非裔美国人和其他有色人种在临床上有益的处方集及其他治疗方式。在此次活动中,内华达州南部黑人护士协会发现全国黑人护士协会成员对参与基因组医学研究存在伦理、法律和社会方面的担忧,这些担忧与文献中报道的各自担忧相符。在本综述中,我们讨论全国黑人护士协会的担忧,以及它们如何与文献中出现的定性主题以及美国国家科学院、工程院和医学院最近关于基因组医学获取差距的活动相关。我们得出结论,研究人员应与美国非裔健康社区领袖合作,以有效地让美国非裔社区参与基因组医学研究,并帮助确保基因组医学不会加剧现有的健康差距。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/96c4/6993150/edb0d4f0597d/10.1177_2050312120901740-fig1.jpg

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