Conley John, Robinson Alexandra, Wilson Rachel, Kuczynski Kristine, Henderson Gail
School of Law, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
Department of Public Policy, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
J Community Genet. 2025 Oct;16(5):503-512. doi: 10.1007/s12687-025-00809-z. Epub 2025 Jun 16.
In 2018, the scientific community was shocked by news that a rogue scientist’s genome editing of embryos had resulted in the birth of twin girls in China. Three major international reports offering ethical and governance guidance on human genome editing (HGE) (by the National Academies’ and Royal Society’s International Commission, the WHO, and the European Group on Ethics) followed in 2020 and 2021. This paper examines whether and how the publication of these reports has had any discernible impact on the global governance landscape. We compare global laws and regulations before and after the reports’ issuance as well as the evolution of softer forms of governance, including funding standards and scientific norms. Data includes the three reports and interviews with people who participated in drafting them. Our analysis indicates that it is impossible to draw direct causal connections between the reports and subsequent legal reforms. In fact, very little has changed in the global legal landscape since they were issued. However, the reports, as well as the broader governance environment (both and law) reflect a widely shared set of scientific and moral values that have been evolving over the last decade. In that sense, the reports have played an important role in refining, ratifying, and publicizing those values. The weight accorded to the reports will make it near impossible for the scientific community and its governmental overseers to repudiate those values and will help to ensure that future scientific developments will be evaluated in their light.
2018年,科学界被一则消息震惊:一名违规科学家对胚胎进行基因编辑,导致中国一对双胞胎女孩出生。随后在2020年和2021年,出现了三份关于人类基因编辑(HGE)的提供伦理和治理指导的重要国际报告(分别由美国国家科学院和英国皇家学会的国际委员会、世界卫生组织以及欧洲伦理小组发布)。本文探讨这些报告的发布是否以及如何对全球治理格局产生了任何可察觉的影响。我们比较了报告发布前后的全球法律法规以及包括资助标准和科学规范在内的较软性治理形式的演变。数据包括这三份报告以及对参与起草报告的人员的访谈。我们的分析表明,无法在报告与随后的法律改革之间建立直接的因果联系。事实上,自报告发布以来,全球法律格局几乎没有变化。然而,这些报告以及更广泛的治理环境(包括法律和道德)反映了一套在过去十年中不断演变的广泛共享的科学和道德价值观。从这个意义上说,这些报告在提炼、认可和宣传这些价值观方面发挥了重要作用。这些报告所具有的影响力将使科学界及其政府监管机构几乎不可能摒弃这些价值观,并将有助于确保未来的科学发展将根据这些价值观进行评估。