Raza Sobia, Hall Alison
PHG Foundation, 2 Worts Causeway, Cambridge, CB1 8RN, UK.
Br Med Bull. 2017 Sep 1;123(1):35-45. doi: 10.1093/bmb/ldx024.
Effective data sharing does not occur in the UK despite being essential for the delivery of high-quality genomic services to patients across clinical specialities and to optimize advances in genomic medicine.
Original papers, reviews, guidelines, policy papers and web-resources.
Data sharing for genomic medicine requires appropriate infrastructure and policies, together with acceptance by health professionals and the public of the necessity of data sharing for clinical care.
There is ongoing debate around the different technical approaches and safeguards that could be used to facilitate data sharing while minimizing the risks to individuals of identification. Lack of consensus undermines trust and confidence.
Ongoing policy developments around genomics and health data create opportunities to ensure systems and policies are in place to support proportionate, effective and safeguarded data sharing.
Mechanisms to improve public trust.
尽管有效数据共享对于向各临床专科患者提供高质量基因组服务以及优化基因组医学进展至关重要，但在英国却并未实现。
原始论文、综述、指南、政策文件及网络资源。
基因组医学的数据共享需要适当的基础设施和政策，同时需要卫生专业人员和公众认可数据共享对于临床护理的必要性。
围绕可用于促进数据共享同时将个体身份识别风险降至最低的不同技术方法和保障措施，一直存在争论。缺乏共识削弱了信任。
围绕基因组学和健康数据的持续政策发展创造了机会，以确保建立系统和政策来支持适度、有效且有保障的数据共享。
提高公众信任的机制。
Zotero 插件