A-STEM, College of Engineering, Swansea University, Crymlyn Burrows, Fabian Way, Swansea, SA1 8EN, UK.
BMC Genomics. 2017 Nov 14;18(Suppl 8):830. doi: 10.1186/s12864-017-4189-1.
This article provides a critical overview of the ethics and governance of genetic biobank research, using the Athlome Consortium as a large scale instance of collaborative sports genetic biobanking. We present a traditional model of written informed consent for the acquisition, storage, sharing and analysis of genetic data and articulate the challenges to it from new research practices such as genetic biobanking. We then articulate six possible alternative consent models: verbal consent, blanket consent, broad consent, meta consent, dynamic consent and waived consent. We argue that these models or conceptions of consent must be articulated in the context of the complexities of international legislation and non legislative national and international biobank governance frameworks and policies, those which govern research in the field of sports genetics. We discuss the tensions between individual rights and public benefits of genomic research as a critical ethical issue, particularly where benefits are less obvious, as in sports genomics. The inherent complexities of international regulation and biobanking governance are challenging in a relatively young field. We argue that there is much nuanced ethical work still to be done with regard to governance of sports genetic biobanking and the issues contained therein.
本文以 Athlome 联盟为例,对遗传生物库研究的伦理和治理进行了批判性的概述。该联盟是一个大规模的合作型运动遗传学生物库。我们提出了一种传统的书面知情同意模式,用于获取、存储、共享和分析遗传数据,并从遗传生物库等新的研究实践中阐述了对其的挑战。然后,我们阐述了六种可能的替代同意模式:口头同意、 blanket 同意、 broad 同意、meta 同意、dynamic 同意和放弃同意。我们认为,这些同意模式或概念必须在国际立法和非立法的国家和国际生物库治理框架和政策的复杂性背景下阐明,这些框架和政策适用于体育遗传学领域的研究。我们讨论了个体权利和基因组研究公共利益之间的紧张关系,这是一个关键的伦理问题,尤其是在体育基因组学中,利益不太明显的情况下。国际监管和生物库治理的内在复杂性在一个相对年轻的领域带来了挑战。我们认为,在运动遗传学生物库的治理和其中包含的问题方面,仍有许多细致的伦理工作要做。