Accessing Biospecimens from the H3Africa Consortium

Accessing Biospecimens from the H3Africa Consortium
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DOI:
10.1089/bio.2017.0008
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发表时间:
2017-04-01
影响因子:
1.6
通讯作者:
Wideroff L
Wideroff L
中科院分区:
生物学4区
文献类型:
--
作者:
Beiswanger CM;Abimiku A;Carstens N;Christoffels A;de Vries J;Duncanson A;du Plessis M;Giovanni M;Littler K;Mulder N;Troyer J;Wideroff L

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泛非联盟,非洲人类健康和遗传学(H3 Africa),成立于2010年,旨在建立非洲大陆基因组医学的研究计划和基础设施。1这一举措的一个关键组成部分是向外部调查人员提供在最初的H3非洲研究期间收集的生物标本和数据,供未来研究之用。尽管H3 Africa基因组数据和生物标本共享的政策和程序已经结合在一起,但本文将讨论为实现生物标本和相关数据的道德和有效共享而开发的流程。为此,在尼日利亚(HVN H3非洲生物储存库[I-HAB])、乌干达(H3非洲乌干达综合生物储存库[IBRH 3AU])和南非(威特沃特斯兰德大学临床实验室服务处的H3非洲生物储存库)建立了生物储存库。这些生物储存库将保存该联合体的DNA和其他样本收集,并促进其分发,以支持非洲科学家并最终支持全球生物医学界的更多研究工作。每个H3 Africa的主要研究者(PI)都同意捐赠他/她在H3 Africa研究中收集的一部分DNA,同时保留其余的DNA用于他/她自己的未来研究。在获得机构和地区或国家伦理审查的适当知情同意后,从H3非洲生物储存库采集了所有可供分发的生物标本。成立了联合会工作组,以制定尊重所有利益攸关方利益的生物标本共享和获取政策。H3 Africa的利益相关者包括生物标本捐赠者及其社区; PI及其收集标本和原始数据的团队;机构、地方和区域伦理委员会;收集和储存样本的地方或国家政府;获得共享生物标本以进行额外研究的科学家;以及从这些研究中获得的生物医学知识的最终消费者。3
Apan-African consortium, Human Health and Her-edity in Africa (H3Africa), was initiated in 2010 to build research programs and infrastructure in genomic medicine on the African continent. 1 A key component of this initiative is making biospecimens and data collected during the initial H3Africa research studies available to external investigators for future research. Although policies and procedures for sharing H3Africa genomic data and biospecimens have been combined, this article will address the process developed to enable the ethical and efficient sharing of the biospecimens and associated data. To this end, biorepositories have been established in Nigeria (HVN H3Africa Biorepository [I-HAB]), Uganda (Integrated Biorepository of H3Africa Uganda [IBRH3AU]), and South Africa (H3Africa Biorepository at Clinical Laboratory Services, University of the Witwatersrand). The biorepositories will preserve the consortium’s DNA and other sample collections and also facilitate their distribution to support additional research efforts by African scientists and eventually the global biomedical community. 2 Each H3Africa principal investigator (PI) has agreed to donate a portion of the DNA collected in his/her H3Africa study while retaining the rest for his/her own future research. All biospecimens to be made available for distribution from the H3Africa biorepositories were collected under appropriate informed consent with institutional and regional or national ethical review. Consortium working groups were established to develop polices for biospecimen sharing and access that respect the interests of all stakeholders. H3Africa stakeholders include the biospecimen donors and their community; the PI and his/her team collecting the specimens and primary data; the institutional, local, and regional ethics committees; the local or national government where samples were collected and stored; the scientists who are granted access to shared biospecimens for additional research; and the eventual consumers of biomedical knowledge to be gained from these studies. 3