Exploring the value of a global gene drive project registry.

Exploring the value of a global gene drive project registry.
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探索全球基因驱动项目注册的价值。

DOI:
10.1038/s41587-022-01591-w
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发表时间:
2023
影响因子:
46.9
通讯作者:
Taitingfong RI
Taitingfong RI
中科院分区:
工程技术1区
文献类型:
--
作者:
Taitingfong RI

文献摘要

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最近呼吁在发布任何基因驱动修饰生物(GDO)之前建立全球项目登记处,这表明登记处对于协调研究、收集数据以监测和评估潜在的生态影响以及促进与社区利益相关者和公众的透明沟通可能很有价值。在此,我们报告 2020 年 12 月 8 日至 9 日召开的 GDO 注册多学科专家研讨会的结果,来自 14 个国家的 70 名参与者参加。参与者拥有基因驱动设计、保护和种群建模、社会科学、利益相关者参与、治理和监管、国际政策和病媒控制等方面的专业知识;他们代表 45 个组织,涵盖负责监督当地病媒控制的国家和地方政府机构、国际组织、非营利组织、大学和地区办事处。研讨会旨在收集对一个核心问题的看法:“基因驱动项目注册在哪些方面既有助于也有损于 GDO 的公平开发、测试和使用?”我们特别询问了注册表的感知目的、需要包含的信息以及注册表的感知价值。讨论得出了三个主要结论:首先,许多与会者一致认为登记处可以为多学科和多部门的工作活动发挥协调作用;其次,这样做可能需要不同的设计元素,具体取决于目标最终用户群体和该群体的预期目的;第三,这些不同的信息要求导致人们对通过登记处共享信息表示担忧,这表明通过这种机制实现透明度存在潜在障碍。我们的结论是,基因驱动项目注册表的任何开发都需要仔细和包容性的审议,包括与潜在的最终用户的审议,以确保注册表设计是最佳的。基因驱动技术的最新进展正在为害虫管理、媒介传播疾病控制和保护提供潜在的新策略1。当开发商、科学家、政策制定者、伦理学家和其他人争论与测试和实施工程化 GDO 相关的危害风险和潜在利益时,如何确保其安全和合乎道德的开发、测试和使用的问题仍然存在。为了协调研究、监测生态影响并促进与社区利益相关者和公众的透明沟通,一些人呼吁在任何基因驱动发布之前建立全球项目登记处 2、3。登记处经常被描述为通过向利益相关者公开有关实验生物技术或医疗的信息来促进透明度。基因检测注册中心的成立是为了响应提高透明度和严格审查实验室开发的基因检测的呼吁4。已经创建了多个临床数据注册中心(例如,https://clinicaltrials.gov/或https://www.who.int/clinical-Trials-registry-platform)以促进数据披露和共享,并建立了多个注册中心来记录信息 关于转基因生物 (GMO) 的信息(例如,https://ec.europa.eu/food/plants/genically-modified-organisms/gmo-register_en、https://bch.cbd.int/en/ 和 https://www.isaaa.org/gmapprovaldatabase/)。世界卫生组织 (WHO) 的人类基因组编辑登记处被描述为遵循透明度和包容性原则,通过向利益相关者提供有关使用基因组编辑技术的临床试验的信息 5。最近,一些学者呼吁......
Recent calls to establish a global pro-ject registry before releasing any gene-drive-modified organisms (GDOs) have suggested a registry could be valuable to coordinate research, collect data to monitor and evaluate potential ecological impacts, and facilitate transparent communication with community stakeholders and the general public. Here, we report the results of a multidisciplinary expert workshop on GDO registries convened on 8–9 December 2020 involving 70 participants from 14 countries. Participants had expertise in gene drive design, conservation and population modeling, social science, stakeholder engagement, governance and regulation, international policy, and vector control; they represented 45 organizations, spanning national and local governmental agencies, international organizations, nonprofit organizations, universities, and district offices overseeing local vector control. The workshop aimed to gather perspectives on a central question:“In what ways could a gene-drive project registry both contribute to and detract from the fair development, testing and use of GDOs?” We specifically queried the perceived purpose of a registry, the information that would need to be included, and the perceived value of a registry. Three primary findings emerged from the discussion: first, many participants agreed a registry could serve a coordinating function for multidisciplinary and multisector work activities; second, doing so may require different design elements, depending on the target end-user group and intended purpose for that group; and third, these different information requirements lead to concerns about information sharing via a registry, suggesting potential obstacles to achieving transparency through such a mechanism. We conclude that any development of a gene-drive project registry requires careful and inclusive deliberation, including with potential end-users, to ensure that registry design is optimal. Recent advances in gene drive technologies are enabling potential new strategies for pest management, vector-borne disease control and conservation 1. As developers, scientists, policymakers, ethicists and others debate the risks of harm and potential benefits associated with testing and implementing engineered GDOs, questions remain about how to ensure their safe and ethical development, testing and use. To coordinate research, monitor ecological impacts and facilitate transparent communication with community stakeholders and the general public, some have called for the establishment of a global project registry before any gene drive release 2, 3. Registries are frequently described as facilitating transparency by making information about experimental biotechnologies or medical treatments publicly accessible to stakeholders. The Genetic Testing Registry was formed in response to calls for enhanced transparency and rigorous review of laboratory-developed genetic tests 4. Several clinical data registries (for example, https://clinicaltrials. gov/or https://www. who. int/clinical-trials-registry-platform) have been created to promote data disclosure and sharing, and several registries have been established to document information on genetically modified organisms (GMOs)(for example, https://ec. europa. eu/food/plants/genetically-modified-organisms/gmo-register_en, https://bch. cbd. int/en/and https://www. isaaa. org/gmapprovaldatabase/). The World Health Organization’s (WHO) Human Genome Editing registry is described as following principles of transparency and inclusivity by making information about clinical trials using genome-editing technologies accessible to stakeholders 5. More recently, some scholars have called for a …