Linking pre-existing biorepositories for medical research: the PopGen 2.0 Network
Linking pre-existing biorepositories for medical research: the PopGen 2.0 Network
复制标题
DOI：
10.1007/s12687-019-00417-8
复制
发表时间：
2019-10-01
影响因子：
1.9
通讯作者：
Krawczak, Michael
中科院分区：
文献类型：
--
作者：
Lieb, Wolfgang;Jacobs, Gunnar;Krawczak, Michael
人类生物信息库对现代医学研究，特别是对全面的基于人群的遗传分析的重要性正在不断增长。虽然大型的集中式机构通常被认为是最适合满足对高质量“生物库”日益增长的需求的机构，但大多数医学研究机构仍然主持着相当不同和分散的生物库活动，由临床部门承担，而且往往具有相当不同的科学范围。毫无疑问，大多数临床医生和医学研究人员都希望在存储和处理他们的生物样本方面得到基础设施的支持，但他们也可能希望获得他们的样本，而不是广泛的正式要求。我们报告了PopGen 2.0网络(P2N)的建立，这是一个由来自德国北部的最初七个生物库组成的总体联盟，它采用了联合但精简的治理结构，并对其样本和数据采取了使用和访问政策。此外，P2N的成员在道德、法律和社会问题上进行了密切合作，并维护了共同的信息技术基础设施。P2N的实施大大改善了参与机构以生物库为基础的研究的前景。因此，该网络可以作为类似倡议的榜样，旨在将先前存在的生物库联系起来，以利于研究质量、效率和透明度。
The significance of human biorepositories for modern medical research, particularly for comprehensive population-based genetic analyses, is constantly growing. While large and centralized institutions are usually considered best suited to meet the increasing demand for high-quality "biobanks," most medical research institutions still host rather heterogeneous and fragmented biobanking activities, undertaken by clinical departments with oftentimes rather different scientific scope. Undoubtedly, most clinicians and medical researchers would appreciate infrastructural support in terms of the storage and handling of their biosamples, but they are also likely to expect access to their samples avoiding extensive formal requirements. We report on the establishment of the PopGen 2.0 Network (P2N), an overarching alliance of initially seven biobanks from Northern Germany which adopted a joint but lean governance structure and use-and-access policy for their samples and data. In addition, the members of P2N have pursued an intense collaboration on ethical, legal and social issues and maintain a common IT infrastructure. The implementation of P2N has substantially improved the prospects of biobank-based research at the participating institutions. The network may thus serve as a role model for similar initiatives geared at linking pre-existing biorepositories for the benefit of research quality, efficiency, and transparency.