媒体首次在人类基因治疗中进行临床试验:探索患者叙述
Rachele E Willard1, Marilyn S Baffoe-Bonnie2, Hasmin C Ramirez
1National Human Genome Research Institute, USA; Wayne State University, USA.
Public understanding of science (Bristol, England)
|September 12, 2025
概括
基因治疗临床试验的媒体报道强调了患者的经验和治疗结果. 分析揭示了生活在遗传条件,基因疗法后果和相关风险的主导主题,平衡希望与谨慎.
科学领域:
- 生物医学研究的研究.
- 医学伦理学医学伦理学
- 科学传播是科学传播.
背景情况:
- 最近基因疗法的进展,包括美国食品和药物管理局的批准,引起了媒体的重大关注.
- 患者参与首次人体临床试验是公众话语的重点.
研究的目的:
- 批判性地分析美国新闻媒体关于基因疗法临床试验患者的文章中的主题和叙事框架.
- 了解患者的故事是如何在基因治疗的背景下呈现的.
主要方法:
- 来自美国新闻来源的43篇特色文章的内容分析 (2017年1月至2022年4月).
- 通过数据库和外部搜索确定了文章,涵盖了各种遗传条件和媒体类型.
主要成果:
- 三个主要主题出现了:与遗传疾病生活的影响,基因治疗治疗的后果和基因治疗的风险.
- 叙事框架主要传达了对基因疗法的希望和谨慎的平衡.
结论:
- 基因疗法试验中的患者叙述是由媒体的描绘塑造的,影响了公众的看法.
- 基因疗法新闻中患者经验的呈现反映了患者倡导和利益相关者利益之间的复杂相互作用.
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