研究中的多基因风险评分的回报:利益相关者对eMERGE-IV研究的看法
Maya Sabatello1, Suzanne Bakken2, Wendy K Chung3
1Center for Precision Medicine and Genomics, Department of Medicine, Columbia University, New York, NY, USA; Division of Ethics, Department of Medical Humanities and Ethics, Columbia University, New York, NY, USA.
多基因风险评分 (PRSs) 对疾病预测有希望,但面临着公平挑战. 解决多层次障碍和实施系统级政策对于公平的PRS实施和改善健康结果至关重要.
科学领域:
- 基因组学就是基因组学.
- 公共卫生 公共卫生
- 健康 公平 卫生 公平
背景情况:
- 多基因风险评分 (PRSs) 提供了预测复杂慢性疾病的潜力.
- 临床实施PRS引发了重大公平问题,特别是对于边缘化社区.
研究的目的:
- 探索利益相关者对多基因风险评分 (PRS) 研究和临床翻译的看法.
- 识别阻碍和促进公平实施PRS的障碍和促进者.
主要方法:
- 与患者,临床医生和机构审查委员会成员进行了在线聚焦小组.
- 探讨了PRS开发,结果返回和临床实施的观点.
主要成果:
- 利益相关者支持PRS的发展和返回结果.
- 确定了包括识字,结构不平等和资源获取在内的多层次障碍.
- 观察到对实施需求和可能性的看法存在显著差异.
结论:
- 需要重新审视PRS研究措施,如激励和后续护理资源.
- 系统层面的政策对于促进基因组研究和健康结果的公平性至关重要.
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