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Responsible sharing of biomedical data and biospecimens via the “Automatable Discovery and Access Matrix” (ADA-M)
npj Genomic Medicine ( IF 5.3 ) Pub Date : 2018-07-23 , DOI: 10.1038/s41525-018-0057-4
J. Patrick Woolley , Emily Kirby , Josh Leslie , Francis Jeanson , Moran N. Cabili , Gregory Rushton , James G. Hazard , Vagelis Ladas , Colin D. Veal , Spencer J. Gibson , Anne-Marie Tassé , Stephanie O. M. Dyke , Clara Gaff , Adrian Thorogood , Bartha Maria Knoppers , John Wilbanks , Anthony J. Brookes

Given the data-rich nature of modern biomedical research, there is a pressing need for a systematic, structured, computer-readable way to capture, communicate, and manage sharing rules that apply to biomedical resources. This is essential for responsible recording, versioning, communication, querying, and actioning of resource sharing plans. However, lack of a common “information model” for rules and conditions that govern the sharing of materials, methods, software, data, and knowledge creates a fundamental barrier. Without this, it can be virtually impossible for Research Ethics Committees (RECs), Institutional Review Boards (IRBs), Data Access Committees (DACs), biobanks, and end users to confidently track, manage, and interpret applicable legal and ethical requirements. This raises costs and burdens of data stewardship and decreases efficient and responsible access to data, biospecimens, and other resources. To address this, the GA4GH and IRDiRC organizations sponsored the creation of the Automatable Discovery and Access Matrix (ADA-M, read simply as “Adam”). ADA-M is a comprehensive information model that provides the basis for producing structured metadata “Profiles” of regulatory conditions, thereby enabling efficient application of those conditions across regulatory spheres. Widespread use of ADA-M will aid researchers in globally searching and prescreening potential data and/or biospecimen resources for compatibility with their research plans in a responsible and efficient manner, increasing likelihood of timely DAC approvals while also significantly reducing time and effort DACs, RECs, and IRBs spend evaluating resource requests and research proposals. Extensive online documentation, software support, video guides, and an Application Programming Interface (API) for ADA-M have been made available.



中文翻译:

通过“自动发现和访问矩阵”(ADA-M)负责地共享生物医学数据和生物标本

考虑到现代生物医学研究的数据丰富性,迫切需要一种系统,结构化,计算机可读的方式来捕获,交流和管理适用于生物医学资源的共享规则。这对于资源共享计划的负责任的记录,版本控制,通信,查询和操作至关重要。但是,缺乏用于管理共享材料,方法,软件,数据和知识的规则和条件的通用“信息模型”,这构成了根本障碍。没有这些,研究道德委员会(REC),机构审查委员会(IRB),数据访问委员会(DAC),生物银行和最终用户几乎不可能自信地跟踪,管理和解释适用的法律和道德要求。这增加了数据管理的成本和负担,并降低了对数据,生物样本和其他资源的有效和负责任的访问。为了解决这个问题,GA4GH和IRDiRC组织赞助了自动发现和访问矩阵(ADA-M,简称为“ Adam”)的创建。ADA-M是一个全面的信息模型,为生成监管条件的结构化元数据“配置文件”提供了基础,从而可以在监管领域有效地应用这些条件。ADA-M的广泛使用将帮助研究人员以负责任和有效的方式在全球范围内搜索和预先筛选潜在数据和/或生物样本资源,以使其与研究计划兼容,从而增加及时获得DAC批准的可能性,同时还大大减少了DAC和REC的时间和精力。 ,IRB花费评估资源请求和研究建议。提供了广泛的在线文档,软件支持,视频指南和ADA-M的应用程序编程接口(API)。

更新日期:2019-11-18
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