遗传咨询师对基因疗法的认识和态度
Chelsey Walsh1,2, Andrea L Durst1, Damara Ortiz1,3,4
1Department of Human Genetics, Graduate School of Public Health, Genetic Counseling Program, University of Pittsburgh, Pittsburgh, Pennsylvania, USA.
Journal of genetic counseling
|July 23, 2024
概括
遗传咨询师 (GCs) 报告说,在讨论基因疗法 (GTs) 时,尽管认识到它们对实践的影响,但意识和舒适度是可变的. 大多数GC希望随着批准GT数量的增加,提供更多的培训.
科学领域:
- 医学遗传学 医学遗传学
- 遗传咨询 遗传咨询
- 药物基因组学 药物基因组学
背景情况:
- 十种基因疗法 (GTs) 被FDA批准用于遗传性疾病.
- 有限的研究存在于医疗保健提供者对GT的知识,特别是在遗传咨询中.
- 遗传咨询师 (GC) 可能对GT及其对实践的影响有不同的认识.
研究的目的:
- 评估遗传咨询师熟悉程度,舒适度和讨论FDA批准的基因治疗的频率.
- 为了评估基因疗法对他们的职业所产生的影响.
- 探索GC关于基因疗法的教育经验和培训需求.
主要方法:
- 从2021年1月到3月,通过listserv和口碑向遗传咨询师分发了一项调查.
- 分析了109名参与者的100个符合条件的答案.
- 该调查评估了与基因疗法相关的熟悉度,舒适度,讨论频率,感知影响和教育背景.
主要成果:
- 受访者更熟悉onasemnogene abeparvovec-xioi,而不是voretigene neparvovec-rzyl. 这一基因的使用率更高.
- 熟悉度,舒适度和讨论频率因专业而异,而不是根据多年的经验.
- 59%的受访者表示GT会影响他们的工作,93%的受访者认为GC应该很舒服地讨论GT;83%的受访者希望接受更多的培训;只有38%的受访者在培训中提到了GT.
结论:
- 遗传咨询师认为基因疗法具有影响力,但表现出不一致的意识和舒适度.
- 在遗传咨询师中,对基因疗法的额外培训有很大的愿望.
- 解决培训缺口对于遗传咨询师至关重要,因为基因治疗领域正在迅速扩大.
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