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Can Genome Editing Therapies Offer Hope Rather Than Frustration? A Perspective on Ethics in India. 基因组编辑疗法能带来希望而不是沮丧吗?印度伦理观。
IF 4 4区 生物学 Q2 GENETICS & HEREDITY Pub Date : 2025-08-01 Epub Date: 2025-05-21 DOI: 10.1089/crispr.2025.0040
Roli Mathur

India's vast population contains a full spectrum of diseases and their variations. The potential of gene editing can be unlocked, but only if the technology is used for the betterment of many, not exclusively the elite. The moral and ethical aspects of this research must be considered in governance frameworks and ethical review to promote access and public engagement. A dialogue between technologists, policymakers, and communities can help align gene editing initiatives with human values. Can these promising technologies offer India's diverse population hope rather than frustration?

印度庞大的人口包含了各种各样的疾病及其变异。基因编辑的潜力是可以被释放的,但前提是这项技术被用于改善许多人的生活,而不仅仅是精英。必须在治理框架和伦理审查中考虑这项研究的道德和伦理方面,以促进获取和公众参与。技术专家、政策制定者和社区之间的对话可以帮助基因编辑计划与人类价值观保持一致。这些有前途的技术能给印度多样化的人口带来希望而不是沮丧吗?
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引用次数: 0
Institutional Bioethics: From Critical Interdisciplinarity to Cosmopolitanism. 制度生命伦理学:从批判的跨学科到世界主义。
IF 4 4区 生物学 Q2 GENETICS & HEREDITY Pub Date : 2025-08-01 Epub Date: 2025-05-21 DOI: 10.1089/crispr.2025.0048
Peter F R Mills

Bioethical institutions around the world have recently evolved from their emergence as a response to the societal challenges posed by advances in life sciences and biotechnology. Over the past quarter century, there has been a shift toward greater interdisciplinarity and inclusivity, incorporating social sciences and public engagement into institutional bioethical practice. In this perspective, I examine the UK's Nuffield Council on Bioethics as a case study of critical interdisciplinarity, contrasting it with more instrumental normative approaches. I highlight the Nuffield Council's commitment to autonomous ethical inquiry, the problematization of foundational assumptions, and the development of a public-facing "non-expert discourse of experts." The challenges faced by this model-including deriving positive normative conclusions, generalizing from situated reflection, and the ambivalent relationship with policymaking-emphasize the need for a globally resonant and action-oriented ethics to guide powerful scientific developments.

世界各地的生物伦理机构最近从它们的出现演变为对生命科学和生物技术进步所带来的社会挑战的回应。在过去的四分之一世纪里,已经出现了向更大的跨学科和包容性的转变,将社会科学和公众参与纳入制度生物伦理实践。从这个角度来看,我将英国纳菲尔德生物伦理学委员会作为一个批判性跨学科的案例研究,并将其与更有用的规范方法进行对比。我强调纳菲尔德委员会致力于自主的伦理调查,基本假设的问题化,以及面向公众的“专家的非专家话语”的发展。该模型所面临的挑战——包括得出积极的规范性结论、从现状反思中归纳、以及与政策制定的矛盾关系——强调了需要一种全球共鸣的、以行动为导向的伦理来指导强有力的科学发展。
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引用次数: 0
Toward a Global Deliberative System for Genome Editing. 迈向基因组编辑的全球审议系统。
IF 4 4区 生物学 Q2 GENETICS & HEREDITY Pub Date : 2025-08-01 Epub Date: 2025-05-21 DOI: 10.1089/crispr.2025.0044
John S Dryzek

Despite widespread agreement on the need for public participation in genome editing governance, questions remain about how best to structure citizen deliberation such that it can better inform policymaking. Representative and transformative conversations are not necessarily enabled by random sampling. Reflecting on lessons learned from recent citizens' juries and assemblies, in this essay I identify group-building, skilling up, recruiting invested participants, and over-sampling of marginal discourses as strategies to advance the contribution of citizen deliberation to a global deliberative system for human heritable genome editing governance.

尽管人们普遍认同公众参与基因组编辑治理的必要性,但关于如何最好地组织公民审议,以便更好地为政策制定提供信息,问题仍然存在。具有代表性和变革性的对话不一定是通过随机抽样来实现的。反思从最近的公民陪审团和集会中吸取的教训,在本文中,我确定了小组建设,技能提升,招募投资参与者,以及边缘话语的过度抽样作为促进公民审议对人类遗传基因组编辑治理的全球审议系统的贡献的策略。
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引用次数: 0
The Roles and Responsibilities of Scientific Journals in Research Governance: Editorial Policymaking at Nature and Springer Nature (1995-2023). 科学期刊在科研治理中的角色与责任:Nature和施普林格Nature的编辑决策(1995-2023)。
IF 4 4区 生物学 Q2 GENETICS & HEREDITY Pub Date : 2025-08-01 Epub Date: 2025-05-21 DOI: 10.1089/crispr.2025.0047
Philip Campbell

Scientific journals develop and enforce editorial guidelines that are a component of governing science. In this essay, the former editor-in-chief of Nature reflects on several prominent examples of how scientific journals have been involved in setting and judging ethical norms in scientific research. Editors, in consultation with external experts, can balance transparency and public trust, stakeholder engagement, inclusive consultation, and access to research to address concerns surrounding dual-use research, societal harms, and research integrity.

科学期刊制定并执行编辑指南,这是管理科学的一个组成部分。在这篇文章中,这位《自然》杂志的前主编回顾了几个突出的例子,说明科学期刊是如何参与制定和评判科学研究中的伦理规范的。编辑在与外部专家协商后,可以平衡透明度和公众信任、利益相关者参与、包容性协商和研究获取,以解决围绕两用研究、社会危害和研究诚信的担忧。
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引用次数: 0
A Reset for Bioethics: A Statement from the Global Observatory for Genome Editing. 生物伦理的重置:基因组编辑全球观察站的声明。
IF 4 4区 生物学 Q2 GENETICS & HEREDITY Pub Date : 2025-08-01 Epub Date: 2025-05-22 DOI: 10.1089/crispr.2025.0058
Sheila Jasanoff, J Benjamin Hurlbut, Krishanu Saha, Jacob D Moses, Daniel Affsprung, Henry Austin, Françoise Baylis, John H Evans, Timothy Hunt, Douglas A Kysar, Laurence Lwoff, Peter Mills, Jahnavi Phalkey, Matthew H Porteus, O Carter Snead, Kaushik Sunder Rajan, Carrie D Wolinetz

How should we govern our increasing power to intervene in the processes of life? Genome editing, especially of the human germline, has brought this question to the forefront of global debate. We must seek to rectify shortcomings of earlier deliberative approaches by setting aside a science-and-technology first approach; expanding the range of questions for deliberation; revisiting the distribution of innovation's benefits and risks; and reimagining the limits of research. This Perspective from the Organizing Committee of the 2025 Global Observatory for Genome Editing International Summit calls for a new social compact, recognizing and rendering accountable the constitutive role of science and technology in shaping the meaning of human life in the 21st century.

我们应该如何管理我们日益增强的干预生命过程的能力呢?基因组编辑,特别是人类生殖系的基因组编辑,使这个问题成为全球辩论的前沿。我们必须放弃科学和技术优先的办法,设法纠正以前审议办法的缺点;扩大审议问题范围;重新审视创新的收益与风险分配;重新想象研究的极限。2025年基因组编辑全球观察站国际峰会组委会的这一展望呼吁制定一项新的社会契约,承认并问责科学和技术在塑造21世纪人类生活意义方面的构成性作用。
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引用次数: 0
From 'Frankenstein Science' to Cosmopolitan Ethics: Overlooked Perspectives on the 'CRISPR Babies' Scandal. 从“弗兰肯斯坦科学”到世界伦理:对“CRISPR婴儿”丑闻的忽视观点。
IF 4 4区 生物学 Q2 GENETICS & HEREDITY Pub Date : 2025-08-01 Epub Date: 2025-05-21 DOI: 10.1089/crispr.2025.0057
Jane Qiu

In November 2018, Chinese biophysicist He Jiankui stunned the world by announcing that he had created the first genetically-modified babies. Is he a rogue scientist? What are the socio-cultural contexts that motivated him to commit an act widely regarded as morally indefensible? What does it say about Chinese bioethics? How should we determine whether it can ever be justified to permanently alter the human gene pool? This article highlights the global institutional failures that enabled this unfortunate episode, including the prevailing international scientific culture and the persistent Western bias against scientific work originated in the Global South. It calls for systemic efforts-including regulatory reforms, increased transparency, public engagement, and international cooperation-to strengthen ethics governance both within nations and across borders. Finally, it advocates for decolonizing bioethics, advancing the sociology of bioethics, and fostering a cosmopolitan approach to ethics grounded in diversity, equity, inclusion, and our shared humanity.

2018年11月,中国生物物理学家贺建奎宣布他创造了第一批转基因婴儿,震惊了世界。他是一个流氓科学家吗?是什么样的社会文化背景促使他做出了被普遍认为在道德上站不住脚的行为?它对中国的生命伦理说了些什么?我们该如何确定永久改变人类基因库的做法是否合理?这篇文章强调了导致这一不幸事件发生的全球制度失败,包括盛行的国际科学文化和西方对源于南方国家的科学工作的持续偏见。它呼吁系统性的努力,包括监管改革、提高透明度、公众参与和国际合作,以加强国家内部和跨境的道德治理。最后,它提倡生物伦理学的非殖民化,推进生物伦理学的社会学,并在多样性、公平、包容和我们共同的人性的基础上培养一种世界性的伦理方法。
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引用次数: 0
Introducing Perspectives from the Global Observatory for Genome Editing. 介绍基因组编辑全球观察站的观点。
IF 4 4区 生物学 Q2 GENETICS & HEREDITY Pub Date : 2025-08-01 Epub Date: 2025-05-23 DOI: 10.1089/crispr.2025.0060
Jacob D Moses, J Benjamin Hurlbut, Sheila Jasanoff, Krishanu Saha
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引用次数: 0
Opposing Human Genetic Engineering. 反对人类基因工程。
IF 4 4区 生物学 Q2 GENETICS & HEREDITY Pub Date : 2025-08-01 Epub Date: 2025-05-21 DOI: 10.1089/crispr.2025.0043
Stuart A Newman

The past five decades have been a time of substantial change in the technological capacity to modify genetic material. During this period, I have maintained an unwavering stance against human germline modification. As a biologist who has researched the complexities of genotype-phenotype relationships, I remain convinced embryo-stage human genetic modification will always remain in the realm of uncontrolled experimentation. Based on my observations and participation in the twists and turns of genetics and society, I point to the limits of calls for "broad societal consensus."

过去五十年是改造遗传物质的技术能力发生重大变化的时期。在此期间,我一直坚持反对人类生殖系改造的坚定立场。作为一名研究基因型-表型关系复杂性的生物学家,我仍然相信,胚胎阶段的人类基因改造将永远处于不受控制的实验领域。根据我对遗传学和社会曲折的观察和参与,我指出了呼吁“广泛的社会共识”的局限性。
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引用次数: 0
Recalibrating Health Governance, Equity, and Reproductive Rights in India: A Case Study from the Global South. 重新调整印度的卫生治理、公平和生殖权利:来自全球南方的案例研究。
IF 4 4区 生物学 Q2 GENETICS & HEREDITY Pub Date : 2025-08-01 Epub Date: 2025-05-21 DOI: 10.1089/crispr.2025.0053
Sarojini Nadimpally, Keertana K Tella

This perspective addresses the question of reproductive governance and public health in India by drawing on experiences as a civil society organization in the field. We attempt to highlight some key issues that have emerged on this question in relation to reproductive rights, sickle cell disease management, and the ethical implications of technological advances, from the location of the Global South. In the discourse on cosmopolitan ethics, the emphasis should be on equity and social justice for marginalized people through a system that respects cultural diversity, combats systemic biases, and ensures patients' autonomy. We underscore the importance of multiple moral intuitions and notions of plurality as central to achieving health justice.

这一观点通过借鉴民间社会组织在这一领域的经验来处理印度的生殖管理和公共卫生问题。我们试图从全球南方的角度,强调在这一问题上出现的与生殖权利、镰状细胞病管理和技术进步的伦理影响有关的一些关键问题。在世界主义伦理的话语中,应该通过尊重文化多样性、打击系统性偏见和确保患者自主权的制度,强调边缘化人群的公平和社会正义。我们强调多重道德直觉和多元化概念的重要性,这是实现卫生正义的核心。
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引用次数: 0
Advances in Gene Therapy for Sickle Cell Disease: From Preclinical Innovations to Clinical Implementation and Access Challenges. 镰状细胞病基因治疗的进展:从临床前创新到临床实施和获取挑战。
IF 3.7 4区 生物学 Q2 GENETICS & HEREDITY Pub Date : 2025-06-01 Epub Date: 2025-05-12 DOI: 10.1089/crispr.2024.0101
Henna Butt, Mamatha Mandava, David Jacobsohn

Sickle cell disease (SCD) is a hereditary blood disorder caused by a specific mutation in the β-globin gene, leading to the production of hemoglobin S, which deforms red blood cells, causing occlusion in small blood vessels. This results in pain, anemia, organ damage, infections, and increased stroke risk. Treatment options, including disease-modifying therapies and curative hematopoietic stem cell transplants, have limited accessibility. Recently, autologous gene therapy has emerged as a promising curative option, particularly for SCD. Gene editing techniques such as CRISPR, base editing, and prime editing offer potential to correct this mutation. In this review, we discuss recent preclinical studies and clinical trials of gene and cell therapies, focusing on the progress of FDA-approved treatments like Lyfgenia and Casgevy. We also examine the many challenges, including accessibility, safety, and long-term efficacy, which continue to shape the future of SCD gene therapy.

镰状细胞病(SCD)是一种遗传性血液疾病,由β-珠蛋白基因的特定突变引起,导致血红蛋白S的产生,使红细胞变形,导致小血管闭塞。这会导致疼痛、贫血、器官损伤、感染和中风风险增加。治疗方案,包括疾病改善疗法和治愈性造血干细胞移植,可及性有限。最近,自体基因治疗已成为一种有希望的治疗选择,特别是对于SCD。基因编辑技术,如CRISPR、碱基编辑和引物编辑,提供了纠正这种突变的潜力。本文综述了近年来基因和细胞治疗的临床前研究和临床试验,重点介绍了fda批准的Lyfgenia和Casgevy等治疗方法的进展。我们还研究了许多挑战,包括可及性、安全性和长期疗效,这些挑战将继续影响SCD基因治疗的未来。
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CRISPR Journal
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