基因组数据的二次使用:患者在测试点的决定以及为国际数据共享提供信息的观点
Melissa Martyn1,2,3, Emily Forbes1,2, Ling Lee1,2,3
1Murdoch Children's Research Institute, The Royal Children's Hospital, 50 Flemington Road, Parkville, VIC, 3052, Australia.
European journal of human genetics : EJHG
|March 26, 2024
概括
大多数接受基因组测试的患者同意分享他们的临床数据用于研究. 患者对数据控制和国际共享的偏好是基因组数据系统的关键考虑因素.
科学领域:
- 基因组医学是基因组医学.
- 生物伦理学生物伦理学
- 医疗信息学 医疗信息学
背景情况:
- 临床基因组数据的国际共享对于推进基因组医学至关重要.
- 患者对分享临床基因组数据进行研究的态度尚不清楚.
研究的目的:
- 确定接受临床基因组测试的患者的数据共享选择.
- 探索患者的经验和偏好,以重新使用他们的基因组数据.
主要方法:
- 分析了1515名接受基因组测试以检测遗传疾病或癌症的患者的临床同意表.
- 对73%的患者进行同意后调查,以评估数据共享决策和偏好.
主要成果:
- 98%的患者同意分享他们的临床基因组数据.
- 父母同意孩子,以及那些担心重新识别的人更有可能拒绝数据共享.
- 60%的人愿意在国际上共享数据,23%的人考虑接收国;89%的人希望对数据使用的持续控制.
结论:
- 大多数患者愿意分享临床基因组数据,支持其系统地用于二级研究.
- 患者对数据重新识别的担忧和对控制的渴望需要精心设计数据共享系统.
- 了解患者的偏好可以为当地和国际基因组数据共享提供有效系统的开发提供信息.
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