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参与非裔美国人和美国白人医学与基因组筛查及研究的关键背景因素:一项定性研究

Key contextual factors involved with participation in medical and genomic screening and research for African American and White Americans: a qualitative inquiry.

作者信息

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

机构信息

Elson S. Floyd College of Medicine, Washington State University, 412 E Spokane Falls Blvd., Spokane, WA, 99202-2131, USA.

The University of Alabama at Birmingham Heersink School of Medicine, Birmingham, AL, 35294, USA.

出版信息

J Community Genet. 2024 Dec;15(6):723-733. doi: 10.1007/s12687-024-00747-2. Epub 2024 Nov 4.

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 twenty-three White Americans participated in the study, 63% of which were female. The mean age of participants was 38.5 (SD = 16.6). The Overarching Theme of Trust is Context Dependent 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取得巨大进展,但对于几个种族群体而言,挑战依然存在。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所得文字记录进行分析,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38.5岁(标准差=16.6)。确定了“信任的总体主题取决于背景”,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)信任取决于人际关系;(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,是限制美国非裔对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,基因组研究倡议必须以一种能与目标特定不同社区产生共鸣的方式进行传达。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地、尊重地促进公平,就应该关注影响信任的关键因素。

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