Pub Date : 2025-08-01Epub Date: 2025-05-21DOI: 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?
{"title":"Can Genome Editing Therapies Offer Hope Rather Than Frustration? A Perspective on Ethics in India.","authors":"Roli Mathur","doi":"10.1089/crispr.2025.0040","DOIUrl":"10.1089/crispr.2025.0040","url":null,"abstract":"<p><p>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?</p>","PeriodicalId":54232,"journal":{"name":"CRISPR Journal","volume":" ","pages":"266-271"},"PeriodicalIF":4.0,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144112740","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-08-01Epub Date: 2025-05-21DOI: 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.
{"title":"Institutional Bioethics: From Critical Interdisciplinarity to Cosmopolitanism.","authors":"Peter F R Mills","doi":"10.1089/crispr.2025.0048","DOIUrl":"10.1089/crispr.2025.0048","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":54232,"journal":{"name":"CRISPR Journal","volume":" ","pages":"304-306"},"PeriodicalIF":4.0,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144112744","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-08-01Epub Date: 2025-05-21DOI: 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.
{"title":"Toward a Global Deliberative System for Genome Editing.","authors":"John S Dryzek","doi":"10.1089/crispr.2025.0044","DOIUrl":"10.1089/crispr.2025.0044","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":54232,"journal":{"name":"CRISPR Journal","volume":" ","pages":"293-295"},"PeriodicalIF":4.0,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144112756","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-08-01Epub Date: 2025-05-21DOI: 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.
{"title":"The Roles and Responsibilities of Scientific Journals in Research Governance: Editorial Policymaking at <i>Nature</i> and Springer Nature (1995-2023).","authors":"Philip Campbell","doi":"10.1089/crispr.2025.0047","DOIUrl":"10.1089/crispr.2025.0047","url":null,"abstract":"<p><p>Scientific journals develop and enforce editorial guidelines that are a component of governing science. In this essay, the former editor-in-chief of <i>Nature</i> 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.</p>","PeriodicalId":54232,"journal":{"name":"CRISPR Journal","volume":" ","pages":"262-265"},"PeriodicalIF":4.0,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144112755","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-08-01Epub Date: 2025-05-22DOI: 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.
{"title":"A Reset for Bioethics: A Statement from the Global Observatory for Genome Editing.","authors":"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","doi":"10.1089/crispr.2025.0058","DOIUrl":"10.1089/crispr.2025.0058","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":54232,"journal":{"name":"CRISPR Journal","volume":" ","pages":"232-238"},"PeriodicalIF":4.0,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144112738","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-08-01Epub Date: 2025-05-21DOI: 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.
{"title":"From 'Frankenstein Science' to Cosmopolitan Ethics: Overlooked Perspectives on the 'CRISPR Babies' Scandal.","authors":"Jane Qiu","doi":"10.1089/crispr.2025.0057","DOIUrl":"10.1089/crispr.2025.0057","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":54232,"journal":{"name":"CRISPR Journal","volume":" ","pages":"257-261"},"PeriodicalIF":4.0,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144112743","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-08-01Epub Date: 2025-05-23DOI: 10.1089/crispr.2025.0060
Jacob D Moses, J Benjamin Hurlbut, Sheila Jasanoff, Krishanu Saha
{"title":"Introducing Perspectives from the Global Observatory for Genome Editing.","authors":"Jacob D Moses, J Benjamin Hurlbut, Sheila Jasanoff, Krishanu Saha","doi":"10.1089/crispr.2025.0060","DOIUrl":"10.1089/crispr.2025.0060","url":null,"abstract":"","PeriodicalId":54232,"journal":{"name":"CRISPR Journal","volume":" ","pages":"225-227"},"PeriodicalIF":4.0,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144112747","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-08-01Epub Date: 2025-05-21DOI: 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."
{"title":"Opposing Human Genetic Engineering.","authors":"Stuart A Newman","doi":"10.1089/crispr.2025.0043","DOIUrl":"10.1089/crispr.2025.0043","url":null,"abstract":"<p><p>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.\"</p>","PeriodicalId":54232,"journal":{"name":"CRISPR Journal","volume":" ","pages":"252-256"},"PeriodicalIF":4.0,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144112749","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-08-01Epub Date: 2025-05-21DOI: 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.
{"title":"Recalibrating Health Governance, Equity, and Reproductive Rights in India: A Case Study from the Global South.","authors":"Sarojini Nadimpally, Keertana K Tella","doi":"10.1089/crispr.2025.0053","DOIUrl":"10.1089/crispr.2025.0053","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":54232,"journal":{"name":"CRISPR Journal","volume":" ","pages":"272-276"},"PeriodicalIF":4.0,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144112750","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-01Epub Date: 2025-05-12DOI: 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.
{"title":"Advances in Gene Therapy for Sickle Cell Disease: From Preclinical Innovations to Clinical Implementation and Access Challenges.","authors":"Henna Butt, Mamatha Mandava, David Jacobsohn","doi":"10.1089/crispr.2024.0101","DOIUrl":"10.1089/crispr.2024.0101","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":54232,"journal":{"name":"CRISPR Journal","volume":" ","pages":"174-188"},"PeriodicalIF":3.7,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144008525","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}