Population studies: return of research results and incidental findings Policy Statement

Population studies: return of research results and incidental findings Policy Statement
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DOI:
10.1038/ejhg.2012.152
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发表时间:
2013-03-01
影响因子:
5.2
通讯作者:
Tasse, Anne Marie
Tasse, Anne Marie
中科院分区:
生物学2区
文献类型:
--
作者:
Knoppers, Bartha Maria;Deschenes, Mylene;Tasse, Anne Marie

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基因组学与社会公共人口项目(P(3)G)是一个非营利性国际联盟,成员来自40多个国家。其目标是领导、催化和协调国际努力和专门知识,以优化人口研究、生物库、研究数据库和其他类似的卫生和社会科学研究基础设施的使用。2011-2012年,关于返回结果的期刊特刊过多,但很少讨论作为未来未指明研究资源的人口研究的特殊情况。P3G认为,重要的是提出一项政策,区分涉及患者的人口研究和疾病(临床)研究的背景,然后界定实际和未来的义务。本政策声明的目标是:(1)描述人口研究的特殊特点,(2)区分研究人员接触这类研究的情况,以及(3)为研究成果和附带发现的返还制定一个框架。《欧洲人类遗传学杂志》(2013年)21245247DOI:10.1038/ejhg.2012.152;2012年7月11日在线发布
The Public Population Project in Genomics and Society (P(3)G) is a not-for profit international consortium with members from more than 40 countries. Its objective is to lead, catalyze, and co-ordinate international efforts and expertise in order to optimize the use of population studies, biobanks, research databases, and other similar health and social science research infrastructures. The year 2011-2012 witnessed a plethora of special issues of journals on the return of results but few discussed the particular situation of population studies that serve as resources for future unspecified research. P3G considers it important to propose a policy that distinguishes between the contexts of population research and disease (clinical) research involving patients and then delineates actual and future obligations. The objectives of this Policy Statement are to: (1) delineate the particular characteristics of population studies, (2) distinguish the circumstances surrounding access by researchers to such studies, and (3) develop a framework for the return of research results and incidental findings. European Journal of Human Genetics (2013) 21, 245-247; doi:10.1038/ejhg.2012.152; published online 11 July 2012