非裔美国人和美国白人参与医疗和基因组筛查与研究的关键背景因素:定性调查。

IF 1.5 Q4 GENETICS & HEREDITY
Crystal Lederhos Smith, B Connor Stark, McKenna Kobalter, Mary Carol Barks, Mariko Nakano-Okuno, Ellen Wager Romesburg, Nita Limdi, Thomas May
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引用次数: 0

摘要

在促进基因组研究人员招聘多元化方面取得了巨大进步,但一些种族人口仍面临挑战。研究表明,对种族歧视的恐惧和对医学的不信任是导致这一问题的交织因素。本研究旨在确定在非裔美国人和美国白人中建立对医疗和基因组筛查与研究信任的关键因素。参与者完成了在线焦点小组讨论,并根据 Schreier 的建议采用定性描述法和内容分析法对讨论记录进行了分析。15 名非洲裔美国人和 23 名美国白人参与了研究,其中 63% 为女性。参与者的平均年龄为 38.5 岁(SD = 16.6)。研究确定了 "信任取决于环境 "这一总体主题,以及以下五个主题,这些主题描述了影响参与者信任度的因素:(1)专业经验、教育和培训可增强信任;(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很有影响;(4)缺乏客观性和偏见会破坏信任;以及(5)对于非裔美国人来说,种族主义是一个根深蒂固的问题,也是限制信任的医疗因素。为有效解决不信任问题并促进多元化参与者的招募,基因组研究计划的宣传方式必须能与特定的多元化目标社区产生共鸣。我们的研究结果提出了影响信任的关键因素,如果我们想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,就应该关注这些因素。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Key contextual factors involved with participation in medical and genomic screening and research for African American and White Americans: a qualitative inquiry.

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.

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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
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