<p>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 <i>hard</i> and <i>soft</i> 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.</p>

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The impact of the three major human genome editing reports on the governance landscape

  • John Conley,
  • Alexandra Robinson,
  • Rachel Wilson,
  • Kristine Kuczynski,
  • Gail Henderson

摘要

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 hard and soft 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.