Zierhut Heather A, Kandikonda Pranathi, Simon Emily M, Donarski Cameron, Kocher Megan, Ramírez Mariana, Lumpkins Crystal Y, Fisher Elena R
Department of Genetics, Cell Biology, and Development, University of Minnesota, 6-160 Jackson Hall, 321 Church Street Southeast, Minneapolis, MN, 55455, USA.
University of Minnesota Libraries, Minneapolis, MN, 55455, USA.
J Community Genet. 2024 Dec;15(6):583-602. doi: 10.1007/s12687-024-00740-9. Epub 2024 Nov 25.
Genetic counseling (GC) services have the potential to improve health outcomes, yet there are documented disparities in the use of GC services among minoritized racial/ethnic populations. Community-based participatory research (CBPR) is an approach to integrate diverse patient perspectives to improve GC services. The objective of this review was to assess the current state of international CBPR within GC and genetics services from 2006 to 2023. Five databases were searched for inclusion criteria: 1) published in 2006 or later; 2) peer-reviewed publication; 3) primary research studies; 4) community-based AND participatory research; 5) focused on GC, clinical genetics, testing, and/or genetic service delivery. Criteria for evaluating CBPR involvement used a synthesis of best processes framework. Screening of 3,824 studies identified 16 papers (n = 12 qualitative; n = 1 quantitative; n = 3 mixed methods). The majority of studies were conducted within the U.S. (n = 12), focused on cancer (n = 5), involved the Asian/Pacific Islander community (n = 8), and centered around genetic education (n = 12). Community partners most frequently were involved in recruitment (n = 12) and results analysis (n = 12) and least involved in research question development (n = 7) and product creation (n = 6). Studies varied substantially in the integration of 9 CBPR gold standard principles with only three studies addressing all nine principles. Few CBPR projects in GC services exist and a lack of guidelines to assess the quality of CBPR methodologies hindered the appraisal of studies. CBPR represents a promising approach to improve GC services and should be explored by genetics service delivery researchers.
遗传咨询（GC）服务有潜力改善健康结果，但在少数族裔人群中，GC服务的使用存在已被记录的差异。基于社区的参与性研究（CBPR）是一种整合不同患者观点以改善GC服务的方法。本综述的目的是评估2006年至2023年国际上在GC和遗传学服务中CBPR的现状。检索了五个数据库以确定纳入标准：1）2006年或之后发表；2）同行评审出版物；3）初步研究；4）基于社区且为参与性研究；5）专注于GC、临床遗传学、检测和/或遗传服务提供。评估CBPR参与情况的标准采用了最佳流程框架的综合。对3824项研究进行筛选后，确定了16篇论文（n = 12篇定性研究；n = 1篇定量研究；n = 3篇混合方法研究）。大多数研究在美国进行（n = 12），聚焦于癌症（n = 5），涉及亚太岛民社区（n = 8），并以遗传教育为中心（n = 12）。社区伙伴最常参与招募（n = 12）和结果分析（n = 12），最少参与研究问题开发（n = 7）和产品创建（n = 6）。在将9项CBPR黄金标准原则进行整合方面，研究差异很大，只有三项研究涉及了所有九项原则。GC服务中的CBPR项目很少，且缺乏评估CBPR方法质量的指南，这阻碍了对研究的评估。CBPR是改善GC服务的一种有前景的方法，遗传服务提供研究人员应加以探索。
