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关于基因组数据共享的公众态度:来自加拿大省级在线调查的结果
Holly Etchegary1, Georgia Darmonkov2, Charlene Simmonds3
1Faculty of Medicine, Memorial University, St. John's, NL, A1B 3V6, Canada. holly.etchegary@med.mun.ca.
BMC medical ethics
|October 7, 2023
概括
对基因组数据共享的公众舒适度对于安全数据库来说是适度的,但对于开放访问来说是低的. 有关数据访问存在担忧,优先考虑临床/学术,而不是商业或政府使用.
科学领域:
- 基因组学就是基因组学.
- 生物伦理学生物伦理学
- 公共卫生 公共卫生
背景情况:
- 基因组数据共享为研究提供了好处,但也带来了隐私风险.
- 了解公众的态度对于伦理基因组研究和政策至关重要.
- 将数据实用性与个人隐私之间的平衡是一个关键的挑战.
研究的目的:
- 评估公众对基因组数据共享的态度.
- 为负责任的基因组数据共享提供政策和实践信息.
- 确定影响公众接受数据共享的因素.
主要方法:
- 截面在线调查. 截面在线调查.
- 在加拿大东部招募了普通公众参与者.
- 对各种基因组数据共享场景的测量态度.
主要成果:
- 适度舒适的共享基因组数据进入受限制的科学数据库.
- 将基因组数据共享到开放或公开的数据库.
- 临床/学术参与者对商业/政府实体的访问优先;对测序和伦理委员会的先前了解影响了态度.
结论:
- 参与者信息和同意必须详细说明数据保护和共享政策.
- 应该提高公众对研究伦理委员会和数据共享的需求的认识.
- 基因组研究政策必须与公众的偏好保持一致,并解决隐私问题.
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