IRB Consent Guidelines: Potential Barriers to Diversity in Research.

IF 1.6 Q3 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH
Evan Decker, Tana Chongsuwat
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引用次数: 0

Abstract

Despite initiatives aimed at improving study participation and inclusion among ethnic and racially minoritized and marginalized populations, participation remains low. While necessary to ensure ethical practice in human participant research, certain Institutional Review Board (IRB) guidelines may introduce additional barriers in research involving these populations. This work outlines guidelines pertaining to consent translation for non-English speaking populations and offers discussion on a greater emphasis for more inclusive methods for marginalized communities. The University of Wisconsin's IRB approved alternative oral consent processes after the community partner determined that standard translation processes would be inefficient. Researchers used translated consent materials for four different ethnic groups (Hmong, Karen, Karenni, and Burmese). We provided recorded consents in each respective language to participants before study participation and obtained verbal consent prior to study participation at the study location. We experienced time and resource constraints in both access to translators and the consent-translation process itself. Furthermore, many participants were unable to read in their native language making standard written consent processes both difficult and impractical. Oral discussion and verbal consent processes were efficient. Adjustments to consent-related guidelines may prevent and eliminate time and resource-related barriers in consent processes. In eliminating such barriers, subsequent improved efficiency in both study design and study promotion areas can work to better promote diversity in research among populations that emphasize oral language and in instances where literacy rates in written non-English language may be lower.

IRB 同意准则:研究多样性的潜在障碍。
尽管采取了旨在提高少数民族和边缘化人群参与研究的积极性和包容性的措施,但参与率仍然很低。虽然有必要确保人类参与者研究的道德实践,但机构审查委员会(IRB)的某些指导方针可能会给涉及这些人群的研究带来额外的障碍。本作品概述了与非英语群体同意书翻译相关的指导原则,并讨论了如何为边缘化群体提供更具包容性的方法。在社区合作伙伴确定标准翻译程序效率低下后,威斯康星大学的 IRB 批准了替代性口头同意程序。研究人员使用了针对四个不同族群(苗族、克伦族、克伦尼族和缅甸族)的翻译同意书材料。在参与研究之前,我们用每种语言向参与者提供了录制好的同意书,并在研究地点参与研究之前获得了口头同意。在获得翻译人员和翻译同意书的过程中,我们都遇到了时间和资源方面的限制。此外,许多参与者无法阅读他们的母语,这使得标准的书面同意程序既困难又不切实际。口头讨论和口头同意程序是有效的。调整与同意相关的指南可以防止和消除同意过程中与时间和资源相关的障碍。在消除这些障碍的同时,研究设计和研究推广领域的效率也会随之提高,从而更好地促进强调口语的人群以及非英语书面语言识字率较低的人群在研究中的多样性。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Health Promotion Practice
Health Promotion Practice PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH-
CiteScore
3.80
自引率
5.30%
发文量
126
期刊介绍: Health Promotion Practice (HPP) publishes authoritative articles devoted to the practical application of health promotion and education. It publishes information of strategic importance to a broad base of professionals engaged in the practice of developing, implementing, and evaluating health promotion and disease prevention programs. The journal"s editorial board is committed to focusing on the applications of health promotion and public health education interventions, programs and best practice strategies in various settings, including but not limited to, community, health care, worksite, educational, and international settings. Additionally, the journal focuses on the development and application of public policy conducive to the promotion of health and prevention of disease.
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