Zhang Joy Y
Centre for Global Science and Epistemic Justice, Division for the Study of Law, Society and Social Justice, University of Kent, Canterbury, UK.
Cell Genom. 2023 Sep 28;3(10):100405. doi: 10.1016/j.xgen.2023.100405. eCollection 2023 Oct 11.
This article underlines two key asynchronies between prevailing governing logic and expanding practices in somatic human genome editing that are hindering an effective and orderly translation of the new technology into public good. The first is a "genomic sovereignty" framing adopted by a number of non-Western countries that may exacerbate data biases in global research and that directs policy attention away from the necessary structural changes required to achieve non-discriminatory and equitable genomic healthcare. The other is a global deficiency in attending to "science at large": the challenge of regulating new assemblages of societal interests that advocate controversial or experimental research, often outside of conventional institutions and aided by "policy shopping." Both issues point to the fact that genomic research does not represent a well-defined scientific commons but rather a domain that requires active "commoning," with the aim of fostering genomic solidarity that coordinates responsible research within and across national boundaries.
本文强调了当前治理逻辑与人类体细胞基因组编辑不断扩展的实践之间的两个关键不同步之处,这些不同步正在阻碍新技术有效且有序地转化为公共利益。第一个是一些非西方国家采用的“基因组主权”框架,这可能会加剧全球研究中的数据偏差,并使政策关注偏离实现非歧视性和公平基因组医疗所需的必要结构变革。另一个是全球在关注“整体科学”方面的不足:监管新出现的社会利益组合面临挑战,这些组合倡导有争议的或实验性研究,通常在传统机构之外进行,并借助“政策套利”。这两个问题都表明,基因组研究并非一个定义明确的科学公共领域,而是一个需要积极进行“公有化”的领域,目的是促进基因组团结,以协调国内外负责任的研究。