在BabySeq项目中为婴儿测序招募多样化的参与者
medRxiv : the preprint server for health sciences
|October 17, 2024
概括
来自代表性不足的种族和民族群体 (URG) 的父母对婴儿基因组测序 (GS) 研究感兴趣. 解决招生障碍和担忧是促进参与儿科GS研究的关键.
科学领域:
- 基因组学就是基因组学.
- 儿科研究 儿科研究
- 健康 公平 卫生 公平
背景情况:
- 儿童的基因组测序 (GS) 需要多元化的参与才能得到公平的应用.
- 代表性不足的种族和民族群体 (URG) 对于包容性基因组研究至关重要.
研究的目的:
- 了解URG父母对婴儿GS研究的看法.
- 确定URG参与GS研究的障碍和促进因素.
- 为儿童基因组研究提供公平招生策略的信息.
主要方法:
- 对50名来自URG.的家长进行了半结构化采访.
- 探讨了父母对婴儿GS的态度,动机和担忧.
主要成果:
- 由于临床,个人和家庭的健康益处,父母对婴儿GS研究的高度兴趣 (44/50).
- 确定的招生威因素:程序性不适 (例如,鞋跟棒),有限的情绪带宽,负面看法和结果问题.
- 大多数父母 (35/40) 想要所有遗传结果类型 (可起诉,不可起诉,儿童和成人发病).
结论:
- 来自URG的家长对参与婴儿GS研究表现出很大的兴趣.
- 提供了设计GS研究的建议,以解决URG家长的担忧.
- 有信息的研究设计可以提高URG的招聘,并促进基因组学中的健康公平.
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