Suppr超能文献

非裔美国人和白人参与医学与基因筛查及研究的关键背景因素:一项定性研究《美国社区遗传学杂志》

Key Contextual Factors Involved with Participation in Medical and Genomic Screening and Research for African American and Caucasian Americans: A Qualitative Inquiry American Journal of Community Genetics.

作者信息

Smith Crystal Lederhos, Stark B Connor, Kobalter McKenna, Barks Mary Carol, Nakano-Okuno Mariko, Romesburg Ellen Weger, Limdi Nita, May Thomas

机构信息

Washington State University.

The University of Alabama at Birmingham Heersink School of Medicine.

出版信息

Res Sq. 2024 Mar 26:rs.3.rs-4132207. doi: 10.21203/rs.3.rs-4132207/v1.

Abstract

Tremendous progress has been made promoting diversity in recruitment for genomic research, yet challenges remain for several racial demographics. Research has cited intertwined fears of racial discrimination and medical mistrust as contributing factors. This study aimed to identify key factors to establishing trust in medical and genomic screening and research among African Americans and White Americans. Participants completed online focus groups and resulting transcripts were analyzed using a qualitative descriptive approach, with content analysis methods based on recommendations by Schreier. Fifteen African Americans and 23 Caucasian Americans participated in the study, 63% of which were female. The mean age of participants was 38.53 (SD = 16.6). The Overarching Theme of was identified, along with the following five themes describing elements influencing trustworthiness for our participants: 1) Professional Experience, Education, and Training Bolster Trust; 2) Trust Depends on Relationships; 3) Cross-checking Provided Information is Influential in Establishing Trust; 4) Trust is Undermined by Lack of Objectivity and Bias; and 5) Racism is an Embedded Concern and a Medical Trust Limiting Component for African Americans. To effectively address mistrust and promote recruitment of diverse participants, genomic research initiatives must be communicated in a manner that resonates with the specific diverse communities targeted. Our results suggest key factors influencing trust that should be attended to if we are to promote equity appropriately and respectfully by engaging diverse populations in genomic research.

摘要

在促进基因组研究招募的多样性方面已经取得了巨大进展,但几个种族群体仍然面临挑战。研究指出,对种族歧视的交织恐惧和对医疗的不信任是促成因素。本研究旨在确定在美国非裔和美国白人中建立对医学和基因组筛查及研究信任的关键因素。参与者完成了在线焦点小组讨论,并使用定性描述方法对产生的记录进行了分析,内容分析方法基于施赖尔的建议。15名美国非裔和23名美国白人参与了该研究,其中63%为女性。参与者的平均年龄为38.53岁(标准差 = 16.6)。确定了总体主题,以及以下五个描述影响我们参与者信任度因素的主题:1)专业经验、教育和培训增强信任;2)信任取决于关系;3)交叉核对所提供的信息对建立信任有影响;4)缺乏客观性和偏见会破坏信任;5)种族主义是一个内在问题,也是限制美国非裔医疗信任的一个因素。为了有效解决不信任问题并促进招募不同的参与者,基因组研究计划必须以与目标特定不同社区产生共鸣的方式进行沟通。我们的结果表明,如果我们要通过让不同人群参与基因组研究来适当且尊重地促进公平,就应该关注影响信任的关键因素。

相似文献

7
COVID-19 Vaccine Decision-making Factors in Racial and Ethnic Minority Communities in Los Angeles, California.
JAMA Netw Open. 2021 Sep 1;4(9):e2127582. doi: 10.1001/jamanetworkopen.2021.27582.
10
A paradigm for understanding trust and mistrust in medical research: The Community VOICES study.
AJOB Empir Bioeth. 2018 Jan-Mar;9(1):39-47. doi: 10.1080/23294515.2018.1432718. Epub 2018 Feb 16.

本文引用的文献

1
Community-Based Participatory Research and its Potential Role in Supporting Diversity in Genomic Science.
J Health Care Poor Underserved. 2021;32(3):1208-1224. doi: 10.1353/hpu.2021.0127.
2
Diversity and inclusion for the All of Us research program: A scoping review.
PLoS One. 2020 Jul 1;15(7):e0234962. doi: 10.1371/journal.pone.0234962. eCollection 2020.
3
Are Public Repository Requirements Exacerbating Lack of Diversity?
Trends Genet. 2020 Jun;36(6):390-394. doi: 10.1016/j.tig.2020.03.004. Epub 2020 Apr 14.
4
Recruiting diversity where it exists: The Alabama Genomic Health Initiative.
J Genet Couns. 2020 Jun;29(3):471-478. doi: 10.1002/jgc4.1258. Epub 2020 Mar 27.
6
Clinical use of current polygenic risk scores may exacerbate health disparities.
Nat Genet. 2019 Apr;51(4):584-591. doi: 10.1038/s41588-019-0379-x. Epub 2019 Mar 29.
7
The Missing Diversity in Human Genetic Studies.
Cell. 2019 Mar 21;177(1):26-31. doi: 10.1016/j.cell.2019.02.048.
8
A roadmap for restoring trust in Big Data.
Lancet Oncol. 2018 Aug;19(8):1014-1015. doi: 10.1016/S1470-2045(18)30425-X.
9
Genomics is failing on diversity.
Nature. 2016 Oct 13;538(7624):161-164. doi: 10.1038/538161a.
10
Understanding public reactions to commercialization of biobanks and use of biobank resources.
Soc Sci Med. 2016 Aug;162:79-87. doi: 10.1016/j.socscimed.2016.06.028. Epub 2016 Jun 16.

文献AI研究员

20分钟写一篇综述,助力文献阅读效率提升50倍。

立即体验

用中文搜PubMed

大模型驱动的PubMed中文搜索引擎

马上搜索

文档翻译

学术文献翻译模型,支持多种主流文档格式。

立即体验