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首页> 外文期刊>Biopreservation and biobanking >Development and progress of Ireland's biobank network: Ethical, legal, and social implications (ELSI), Standardized documentation, sample and data release, and international perspective
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Development and progress of Ireland's biobank network: Ethical, legal, and social implications (ELSI), Standardized documentation, sample and data release, and international perspective

机译：爱尔兰生物库网络的发展与进步：伦理，法律和社会影响（ELSI），标准化文件，样本和数据发布以及国际视野

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Biobank Ireland Trust (BIT) was established in 2004 to promote and develop an Irish biobank network to benefit patients, researchers, industry, and the economy. The network commenced in 2008 with two hospital biobanks and currently consists of biobanks in the four main cancer hospitals in Ireland. The St. James's Hospital (SJH) Biobank coordinates the network. Procedures, based on ISBER and NCI guidelines, are standardized across the network. Policies and documents - Patient Consent Policy, Patient Information Sheet, Biobank Consent Form, Sample and Data Access Policy (SAP), and Sample Application Form have been agreed upon (after robust discussion) for use in each hospital. An optimum sequence for document preparation and submission for review is outlined. Once consensus is reached among the participating biobanks, the SJH biobank liaises with the Research and Ethics Committees, the Office of the Data Protection Commissioner, The National Cancer Registry (NCR), patient advocate groups, researchers, and other stakeholders. The NCR provides de-identified data from its database for researchers via unique biobank codes. ELSI issues discussed include the introduction of prospective consent across the network and the return of significant research results to patients. Only 4 of 363 patients opted to be re-contacted and re-consented on each occasion that their samples are included in a new project. It was decided, after multidisciplinary discussion, that results will not be returned to patients. The SAP is modeled on those of several international networks. Biobank Ireland is affiliated with international biobanking groups - Marble Arch International Working Group, ISBER, and ESBB. The Irish government continues to deliberate on how to fund and implement biobanking nationally. Meanwhile BIT uses every opportunity to promote awareness of the benefits of biobanking in events and in the media.
机译：爱尔兰生物银行信托基金（BIT）成立于2004年，旨在促进和发展爱尔兰生物银行网络，使患者，研究人员，行业和经济受益。该网络始于2008年，拥有两家医院生物库，目前由爱尔兰四家主要癌症医院的生物库组成。圣詹姆斯医院（SJH）生物库负责协调网络。基于ISBER和NCI准则的过程在整个网络中都是标准化的。政策和文件-患者同意书，患者信息表，生物库同意书，样品和数据访问政策（SAP）以及样品申请表已经过商定（经过深入讨论），可在每家医院使用。概述了文件准备和提交以供审核的最佳顺序。在参与的生物库之间达成共识后，SJH生物库将与研究和道德委员会，数据保护专员办公室，美国国家癌症登记局（NCR），患者倡导者团体，研究人员以及其他利益相关者保持联系。 NCR通过独特的生物库代码为研究人员提供来自数据库的去识别数据。讨论的ELSI问题包括在网络中引入前瞻性同意以及将重要的研究结果返还给患者。 363位患者中只有4位选择在每次将他们的样品包括在新项目中时进行重新联系和同意。经过多学科讨论，决定将结果不退还给患者。 SAP以几个国际网络为模型。爱尔兰生物银行隶属于国际生物银行组织-Marble Arch国际工作组，ISBER和ESBB。爱尔兰政府继续研究如何在全国范围内资助和实施生物银行。同时，BIT抓住一切机会，在活动和媒体中提高对生物银行优势的认识。

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