Brief Funct Genomics. 2018 Jan 1;17(1):1-7. doi: 10.1093/bfgp/elx008.
When obtaining samples from biobanks, resolving ethical and legal concerns is a time-consuming task where researchers need to balance the needs of privacy, trust and scientific progress. The Biobanking and Biomolecular Resources Research Infrastructure-Large Prospective Cohorts project has resolved numerous such issues through intense communication between involved researchers and experts in its mission to unite large prospective study sets in Europe. To facilitate efficient communication, it is useful for nonexperts to have an at least basic understanding of the regulatory system for managing biological samples.Laws regulating research oversight are based on national law and normally share core principles founded on international charters. In interview studies among donors, chief concerns are privacy, efficient sample utilization and access to information generated from their samples. Despite a lack of clear evidence regarding which concern takes precedence, scientific as well as public discourse has largely focused on privacy concerns and the right of donors to control the usage of their samples.It is therefore important to proactively deal with ethical and legal issues to avoid complications that delay or prevent samples from being accessed. To help biobank professionals avoid making unnecessary mistakes, we have developed this basic primer covering the relationship between ethics and law, the concept of informed consent and considerations for returning findings to donors.
从生物库获取样本时,解决伦理和法律问题是一项耗时的任务,研究人员需要在隐私、信任和科学进步的需求之间取得平衡。生物银行和生物分子资源研究基础设施-大型前瞻性队列项目通过涉及研究人员与专家之间的密集沟通,解决了许多此类问题,其任务是团结欧洲的大型前瞻性研究集。为了促进有效的沟通,对于非专家来说,至少对管理生物样本的监管系统有一个基本的了解是有用的。规范研究监督的法律基于国家法律,通常共享基于国际宪章的核心原则。在对捐赠者的访谈研究中,主要关注点是隐私、有效利用样本以及获取其样本产生的信息。尽管缺乏明确的证据表明哪个关注点优先,但科学和公共话语在很大程度上集中在隐私问题上,以及捐赠者控制其样本使用的权利上。因此,积极处理伦理和法律问题以避免因延误或阻止样本访问而产生的并发症很重要。为了帮助生物库专业人员避免犯不必要的错误,我们开发了这个基本入门指南,涵盖了伦理和法律之间的关系、知情同意的概念以及向捐赠者返还研究结果的考虑因素。