Integrating genomic medicine into primary care -examining perceptions of community advisory board members.

IF 1.8 Q4 GENETICS & HEREDITY
Paramita Das, Whitley V Kelley, Catanya G Stager, Tiffany Osborne, Irene Moss, Kelly East, Samantha Whitfield, Bruce Korf, Nita Limdi, Lori Brand Bateman
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引用次数: 0

Abstract

The Alabama Genomic Health Initiative (AGHI), funded by the state of Alabama, aims to provide genomic testing, interpretation, and counseling free of charge to Alabama residents. A 14-member Community Advisory Board (CAB) was convened in 2021 to provide community insight on integrating genomic medicine into clinical care and assessing future perspectives. The CAB was comprised of members from diverse ethnic backgrounds and represented a wide range of age groups, with balanced gender representation from two Alabama counties. The CAB met quarterly, and the team explored the perceptions of members related to genomic medicine through qualitative inquiry with exploratory quantitative findings. Self-administered pre- and post-surveys, completed prior to the first CAB meeting (pre) and after meeting five (post), were utilized to evaluate positive and negative views towards the future of genomic medicine. Five meetings were conducted in a focus group format, and transcripts were coded and analyzed to identify emerging themes. Ten of fourteen (71%) CAB members completed both surveys. Results indicate there was a slight shift in responses related to the future of genomic medicine from pre to post-test, but no significant changes were noted. Eleven of fourteen (80%) CAB members attended four out of five meetings. The prominent themes included barriers to genomic testing, strategies for recruitment, and recommendations for sharing test results. Members believed that participation in the CAB facilitated acquiring new knowledge and insight on genomic medicine.

将基因组医学纳入初级保健——检验社区咨询委员会成员的看法。
阿拉巴马州基因组健康倡议(AGHI)由阿拉巴马州资助,旨在为阿拉巴马州居民免费提供基因组检测、解释和咨询。一个由14名成员组成的社区咨询委员会(CAB)于2021年召开会议,就将基因组医学纳入临床护理和评估未来前景提供社区见解。该委员会的成员来自不同的种族背景,代表了广泛的年龄组,来自阿拉巴马州两个县的男女代表比例平衡。CAB每季度召开一次会议,该团队通过定性调查和探索性定量调查,探讨了成员对基因组医学的看法。在第一次CAB会议之前(会议前)和第五次会议之后(会议后)完成的自我管理的前后调查,用于评估对基因组医学未来的积极和消极看法。以焦点小组形式举行了五次会议,对会议记录进行了编码和分析,以确定新出现的主题。14名CAB成员中有10名(71%)完成了这两项调查。结果表明,与基因组医学未来相关的反应从测试前到测试后略有变化,但没有明显变化。14名CAB成员中的11名(80%)参加了5次会议中的4次。突出的主题包括基因组测试的障碍、招募策略和分享测试结果的建议。委员们认为,参与基因组学委员会有助于获得有关基因组医学的新知识和新见解。
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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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