Self-governance in the Human Genome Editing Era: Can Science Rise to the Challenge?

人类基因组编辑时代的自治：科学能否应对挑战？

• 批准号: 10404434
• 负责人: CHRISTOPHER Thomas SCOTT
• 金额: $ 26.01万
• 依托单位: BAYLOR COLLEGE OF MEDICINE
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-17 至 2024-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10404434
• 关键词: Area; Basic Science; Biological Sciences; CRISPR/Cas technology; Case Study; Child; China; Clustered Regularly Interspaced Short Palindromic Repeats; Contraceptive methods; Data; Data Analyses; Databases; Development; Disease; Embryo; Engineering; Ethics; Evaluation; Evolution; Explosion; Failure; Future; Genes; Genetic Diseases; Genetic Materials; Genome; Goals; Hand; Human; Human Genome; Individual; Institution; Interview; Knowledge; Legal; Link; Medicine; Mentors; Methods; Modeling; Organism; Policies; Policy Making; Politics; Reporting; Research; Research Personnel; Retinal blind spot; Role; Science; Science Policy; Scientific Inquiry; Scientist; Structure; Surveys; Technology; Testing; Thick; Time; Trust; United States National Academy of Sciences; United States National Institutes of Health; Work; base; disability; ethical legal social implication; experience; experimental study; follow-up; genetic technology; genome editing; improved; infertility treatment; insight; interest; parent grant; prevent; reproductive; response; safety and feasibility; social; tool

PROJECT SUMMARY (PARENT GRANT) Human genome editing is a powerful tool for creating precise changes to the genome, an organism’s complete set of genetic material. With these advances has come an explosion of interest in the possible applications of genome editing, both in conducting basic research and the potential to prevent, treat, and cure disease and disability. Genome editing could provide insights into reproductive failures and improve contraception and fertility treatments. Editing the human germline might prevent genetic disease in future children and their descendants, and recent experiments with non-viable and viable human embryos tested germline editing in genetic disease, examining the safety and feasibility of the CRISPR/Cas9 approach. The rapid pace of human gene editing science raises significant ethical, legal, and social challenges, and policy making that can better anticipate and prepare for these challenges is urgently needed. The National Academies of Sciences, Engineering and Medicine (NASEM) has issued three reports on emerging genetic technologies. Each report calls for better ways to anticipate the future of these technologies, including robust levels of values-based public engagement. The long-term goal of our research is to develop a robust, scalable, model of anticipatory governance for human genome editing technologies that incorporates public values. The objective of this proposal is to use an anticipatory approach with a group of experts and engaged publics to identify the most urgent ethical, social, and political dilemmas that emerge in a set of plausible futures of genome editing. With our experts, we will evaluate existing governance structures, identify blind spots, and produce a set of proposed policy responses. This project would be the first comprehensive empirical study to apply strategies of anticipatory governance to the management and control of genome editing technologies. It will be the first end-to-end application of anticipatory governance in the life sciences, where robust public engagement is bookended by expert stakeholder deliberations. It will improve the guidance of this research by using methods in foresight and engagement with key stakeholders and the public to identify the most plausible ethical, legal and social challenges informed by scientific and technical realities. If genome editing is eventually considered safe and effective, the time for constructing frameworks of anticipatory policymaking is now, not after the technologies have already emerged.

项目摘要（家长资助） 人类基因组编辑是一种强大的工具，可以对基因组进行精确的改变，而基因组是生物体的完整组成部分。 随着这些进展，人们对遗传物质的可能应用产生了浓厚的兴趣。 基因组编辑，既可以进行基础研究，也可以预防、治疗和治愈疾病和 基因组编辑可以提供对生殖失败的见解并改善避孕和治疗。 编辑人类生殖系可能会预防未来孩子及其后代的遗传病。 后代，最近用非存活和存活人类胚胎进行的实验测试了种系编辑 遗传疾病，检验 CRISPR/Cas9 方法的安全性和可行性人类的快速发展。 基因编辑科学提出了重大的伦理、法律和社会挑战，以及政策制定可以更好地 美国国家科学院迫切需要预测并为这些挑战做好准备。 工程与医学 (NASEM) 发布了三份关于新兴基因技术的报告。 呼吁更好的方法来预测这些技术的未来，包括基于价值的强大水平 公众参与。 我们研究的长期目标是开发一个强大的、可扩展的预期治理模型 该提案的目标是利用包含公共价值观的人类基因组编辑技术。 与专家组和公众共同参与的前瞻性方法，以确定最紧迫的道德、社会、 与我们的专家一起，我们将解决基因组编辑的一系列看似合理的未来中出现的政治困境。 评估现有的治理结构，找出盲点，并制定一系列拟议的政策应对措施。 该项目将是第一个将预期治理策略应用于 基因组编辑技术的管理和控制将是第一个端到端的应用。 生命科学领域的预期治理，由专家负责强有力的公众参与 它将通过使用前瞻性和前瞻性的方法来改进本研究的指导。 与主要利益相关者和公众合作，确定最合理的道德、法律和社会方案 科学和技术现实带来的挑战是否最终被认为是安全和的。 有效，现在是构建预期决策框架的时候，而不是在技术出现之后 已经出现了。