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New Genetics and Society
Critical Studies of Contemporary Biosciences
Volume 42, 2023 - Issue 1
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Research Article

The unexpected and unanticipated announcement of the “world’s first” gene edited babies: breaching, repairing and strengthening community boundaries

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Article: e2155124 | Received 13 Jan 2022, Accepted 29 Nov 2022, Published online: 20 Dec 2022

References

  • Addison, C. 2017. “Spliced: Boundary-Work and the Establishment of Human Gene Therapy.” BioSocieties 12 (2): 257–281. doi: 10.1057/biosoc.2016.9
  • Akrich, M. 1992. “The De-Scription of Technical Objects.” In Shaping Technology\Building Society, edited by W. Bijker, and J. Law, 205–25. Cambridge, MA: MIT Press.
  • Angrist, M., et al. 2020. “Reactions to the National Academies/Royal Society Report on Heritable Human Genome Editing.” The CRISPR Journal 3 (5): 332–349. doi: 10.1089/crispr.2020.29106.man
  • Anon. 2018a. “Chinese Scientist Claims to Have Created ‘World’s First Genetically Edited Babies.” The Telegraph, November 26.
  • Anon. 2018b. “Chinese Scientist ‘Proud’ of Gene-Editing Trial Despite International Outcry.” The Telegraph, November 28.
  • Anon. 2018c. “World’s First Gene-Edited Babies Created in China, Claims Scientist.” The Guardian, November 26.
  • Appleyard, B. 2018. “Gene Edited Chinese Twins Usher in the Age Of Unnatural Selection.” The Times, December 2.
  • Baltimore, D., et al. 2018. On Human Genome Editing II: Statement by the Organizing Committee of the Second International Summit on Human Genome Editing (29/11/2018).
  • Bauer, M. W., and G. Gaskell (Eds.). 2002. Biotechnology. The making of a global controversy. Cambridge, UK: Cambridge University Press.
  • BBC. 2019. China Jails ‘Gene-Edited Babies’ Scientist For Three Years. 30/12/2019 https://www.bbc.co.uk/news/world-asia-china-50944461.
  • Best, S. 2018. “First Genetically Edited BABIES Created by ‘Dangerous and Irresponsible’ Scientist.” The Mirror, November 26.
  • Blakely, R. 2018. “Scientist Claims First Gene-Edited Babies.” The Times, November 26.
  • Bowen, G. 2009. “Document Analysis as a Qualitative Research Method.” Qualitative Research Journal 9 (2): 27–40. doi: 10.3316/QRJ0902027
  • Braun, V., and V. Clarke. 2021. Thematic Analysis: A Practical Guide. London: Sage.
  • Brown, N. 2000. “Organising/Disorganising the Breakthrough Motif: Dolly the Cloned Ewe Meets Astrid the Hybrid pig.” In Contested Futures: A Sociology of Prospective Techno-Science, edited by N. Brown, B. Rappert, and A. Webster, 87–108. New York, NY: Routledge.
  • Calabrese, C., J. Ding, B. Millam, and G. Barnett. 2020. “The Uproar Over Gene-Edited Babies: A Semantic Network Analysis of CRISPR on Twitter.” Environmental Communication 14 (7): 954–970. doi: 10.1080/17524032.2019.1699135
  • Callaway, E. 2016. “Dolly at 20: The Inside Story on the World’s Most Famous Sheep.” Nature 534: 604–608. doi: 10.1038/534604a
  • Campbell, P. 2011. “Boundaries and Risk: Media Framing of Assisted Reproductive Technologies and Older Mothers.” Social Science & Medicine 72 (2): 265–272. doi: 10.1016/j.socscimed.2010.10.028
  • Caulfield, T., and C. Condit. 2012. “Science and the Sources of Hype.” Public Health Genomics 15 (3-4): 209–217. doi: 10.1159/000336533
  • Chekar, C., and J. Kitzinger. 2007. “Science, Patriotism and Discourses of Nation and Culture: Reflections on the South Korean Stem Cell Breakthroughs and Scandals.” New Genetics and Society 26 (3): 289–307. doi: 10.1080/14636770701701790
  • Cohen, J. 2019. “The Untold Story of the ‘Circle of Trust’ Behind the World's First Gene-Edited Babies.” Science. https://doi.org/10.1126/science.aay9400
  • Cwik, B. 2020. “Revising, Correcting, and Transferring Genes.” The American Journal of Bioethics 20 (8): 7–18. doi: 10.1080/15265161.2020.1783024
  • Cyranoski, D. 2019. “China set to Introduce Gene-Editing Regulation Following CRISPR-Baby Furore - The Draft Rules Mean That Anyone who Manipulates Human Genes in Adults or Embryos is Responsible for Adverse Outcomes.” Nature. https://www.nature.com/articles/d41586-019-01580-1.
  • Dimond, R., J. Lewis, and G. Thomas. 2021. “Editorial: Themed Issue: Understanding the Technical and Social Landscape of Gene Editing.” New Genetics and Society 40 (4): 361–366. doi: 10.1080/14636778.2021.2004032
  • Dimond, R., and N. Stephens. 2018. Legalising Mitochondrial Donation: Enacting Ethical Futures in UK Biomedical Politics. London: Palgrave Pivot.
  • Doudna, J. A., and E. Charpentier. 2014. “The new Frontier of Genome Engineering with CRISPR-Cas9.” Science 346: 6213. doi: 10.1126/science.1258096
  • Douglas, M. 1966. Purity and Danger: An Analysis of Concepts of Pollution and Taboo. London: Routledge.
  • Dow, K. 2017. “‘‘The men who Made the Breakthrough’: How the British Press Represented Patrick Steptoe and Robert Edwards in 1978.” Reproductive Biomedicine & Society Online 4: 59–67. doi: 10.1016/j.rbms.2017.07.002
  • Feeney, O., et al. 2021. “Ethics, Patents and Genome Editing: A Critical Assessment of Three Options of Technology Governance.” Frontiers in Political Science 3: 731505. doi: 10.3389/fpos.2021.731505
  • Gabbatiss, J. 2018. “World’s First Genetically Altered Babies Born in China, scientist claims.” The Independent, November 26.
  • Gieryn, T. F. 1983. “Boundary-work and the Demarcation of Science from non-Science: Strains and Interests in Professional Ideologies of Scientists.” American Sociological Review 1983: 781–795. doi: 10.2307/2095325
  • González Santos, S. P., N. Stephens, and R. Dimond. 2018. “Narrating the First “Three-Parent Baby”: The Initial Press Reactions from the United Kingdom, the United States, and Mexico.” Science Communication 40 (4): 419–441. doi: 10.1177/1075547018772312
  • Greely, H. T. 2019. “CRISPR’d Babies: Human Germline Genome Editing in the ‘He Jiankui Affair’.” Journal of Law and Biosciences 6 (1): 111–183. doi: 10.1093/jlb/lsz010
  • Greely, H. T. 2021. CRISPR People: The Science and Ethics of Editing Humans. Cambridge, MA: MIT Press.
  • Gregory, J., and S. Miller. 1998. Science in Public: Communication, Culture, and Credibility. New York: Plenum Press.
  • Haran, J., J. Kitzinger, M. McNeil, and K. O'Riordan. 2008. Human Cloning in the Media: From Science Fiction to Science Practice. London: Taylor & Francis.
  • Hasson, K., and M. Darnovsky. 2018. “Gene-Edited Babies: No One Has the Moral Warrant to go it Alone.” The Guardian, November 27.
  • Hesselmann, F., and M. Reinhart. 2019. “Science Means Never Having to say You’re Sorry? Apologies for Scientific Misconduct.” Science Communication 41 (5): 552–579. doi: 10.1177/1075547019860848
  • Hsieh, H.-F., and S. E. Shannon. 2005. “Three Approaches to Qualitative Content Analysis.” Qualitative Health Research 15 (9): 1277–1288. doi: 10.1177/1049732305276687
  • Iltis, A. S., S. Hoover, and K. R. Matthews. 2021. “Public and Stakeholder Engagement in Developing Human Heritable Genome Editing Policies: What Does it Mean and What Should it Mean?” Frontiers in Political Science 3: 117. https://www.frontiersin.org/articles/10.3389/fpos.2021.730869/full.
  • Ishii, T. 2017. “Germ Line Genome Editing in Clinics: The Approaches, Objectives and Global Society.” Briefings in Functional Genomics 16 (1): 46–56. doi: 10.1093/bfgp/elv053
  • Jasanoff, S., B. Hurlbut, and K. Saha. 2015. “CRISPR Democracy: Gene Editing and the Need for Inclusive Deliberation.” Issues in Science and Technology 32 (1): 25–32.
  • Jasanoff, S., J. B. Hurlbut, and K. Saha. 2019. “Democratic Governance of Human Germline Genome Editing.” The CRISPR Journal 2 (5): 266–271. doi: 10.1089/crispr.2019.0047
  • Jensen, E. 2010. “Between Credulity and Scepticism: Envisaging the Fourth Estate in 21st-Century Science Journalism.” Media, Culture & Society 32 (4): 615–630. doi: 10.1177/0163443710367695
  • Keach, S. 2018. “EMBRY-NO. Defiant Chinese Scientist Says SECOND Woman Pregnant with ‘Gene-Edited Baby’.” - and More are on the way. The Sun 28/11: 18.
  • Kim, J., and K. Park. 2013. “Ethical Modernization: Research Misconduct and Research Ethics Reforms in Korea Following the Hwang Affair.” Science and Engineering Ethics 19 (2): 355–380. doi: 10.1007/s11948-011-9341-8
  • Kirksey, E. 2021. The Mutant Project: Inside the Global Race to Genetically Modify Humans. New York: Policy Press.
  • Kitzinger, J., C. Williams, and L. Henderson. 2000. “Science, media and society: the framing of bioethical debates around embryonic stem cell research between 2000 and 2005.” In New Genetics, New Social Formations, edited by P. Glasner, P. Atkinson, and H. Greenslade, 204–230. London: Routledge.
  • Knapton, S. 2018. “Investigation Launched into ‘Monstrous’ Claims Scientist has Genetically Edited Humans.” The Telegraph, November 26.
  • Krimsky, S. 2019. “Breaking the Germline Barrier in a Moral Vacuum.” Accountability in Research 26 (6): 351–368. doi:10.1080/08989621.2019.1644171.
  • Kuo, L. 2018a. “China Orders Inquiry into ‘World’s First Gene-Edited Babies’.” The Guardian, November 27.
  • Kuo, L. 2018b. “Work on Gene-Edited Babies Blatant Violation of the Law, says China.” The Guardian, November 29.
  • Lander, E. S., et al. 2019. “Adopt a Moratorium on Heritable Genome Editing.” Nature 567: 165–168.
  • Lave, J., and E. Wenger. 1991. Situated Learning: Legitimate Peripheral Participation. Cambridge, UK: Cambridge University Press.
  • Lewis, J. T., and P. A. Atkinson. 2011. “The Surveillance of Cellular Scientists’ Practice.” BioSocieties 6 (4): 381–400.
  • Mahalatchimy, A., et al. 2021. “Framing and Legitimating EU Legal Regulation of Human Gene-Editing Technologies: Key Facets and Functions of an Imaginary.” Journal of Law and the Biosciences, 1–30. doi:10.1093/jlb/lsaa080.
  • Malik, K. 2018. “Don’t Dismiss Gene Editing on Account of One Rogue Case.” The Guardian, December 2.
  • Marchione, M. 2018. “Chinese Researcher Claims First Gene-Edited Babies.” AP News, November 26.
  • Martin, P. A., and I. Turkmendag. 2021. “Thinking the Unthinkable: How did Human Germline Genome Editing Become Ethically Acceptable?” New Genetics and Society 4 (40): 384–405.
  • Meyer, M. 2022. “Taking Responsibility, Making Irresponsibility: Controversies in Human Gene Editing.” Social Studies of Science 52 (1): 127–143.
  • Moody, O. 2017. “Edit Babies’ Genes to Wipe out Inherited Disease, say Scientists.” Times, February 15.
  • Morrison, M., and S. De Saille. 2019. “CRISPR in Context: Towards a Socially Responsible Debate on Embryo Editing.” Palgrave Communications 5: 110.
  • Mulkay, M. 1993. “Rhetorics of Hope and Fear in the Great Embryo Debate.” Social Studies of Science 23: 721–742.
  • NAM. 2020. National Academy of Medicine, National Academy of Sciences, and the Royal Society. Heritable Human Genome Editing. Washington, DC: The National Academies Press.
  • National Academy of Sciences and National Academy of Medicine. 2017. Human Genome Editing: Science, Ethics and Governance. Washington, DC: The National Academies Press.
  • Nelson, J. P., C. L. Selin, and C. T. Scott. 2021. “Toward Anticipatory Governance of Human Genome Editing: A Critical Review of Scholarly Governance Discourse.” Journal of Responsible Innovation 8 (3): 382–420.
  • Nerlich, B., S. Johnson, and D. D. Clarke. 2003. “THE FIRST ‘DESIGNER BABY’: The Role of Narratives, Clichés and Metaphors in the Year 2000 Media Debate.” Science as Culture 12 (4): 471–498.
  • Nuffield Council on Bioethics. 2018. Genome Editing and Human Reproduction: Social and Ethical Issues.
  • Olson, S. and National Academies of Sciences, Engineering, and Medicine. 2016. International Summit on Human Gene Editing: A Global Discussion. International Summit on Human Gene Editing: A Global Discussion.
  • Owen, R., R. Stilgoe, and P. Macnaghten. 2013. “Developing a Framework for Responsible Innovation.” Research Policy 42 (9): 1568–1580.
  • Petit, H. 2018a. “A ‘Monstrous’ Experiment or a Huge Leap For Science? Experts condemn ‘Irresponsible’ Chinese Scientists Who Claim to Have Edited the DNA of Twins to Give the Immunity to HIV.” The Daily Mail, November 26.
  • Petit, H. 2018b. “Chinese Scientists Who Claims he Made World’s First Gene-Edited Babies Says a SECOND Pregnancy is Underway as Hospital Where he Performed the Scandal-Hit Work Accuses Him of Forgery.” The Daily Mail, November 28.
  • Pickersgill, M. 2012. “The co-production of science, ethics, and emotion.” Science, Technology, & Human Values 37 (6): 579–603.
  • Prior, L. 2008. “Repositioning Documents in Social Research.” Sociology 42 (5): 821–836.
  • Ranisch, R., and H. J. Ehni. 2020. “Fading red Lines? Bioethics of Germline Genome Editing.” Bioethics 34 (1): 3–6.
  • Regaldo, A. 2018. “Chinese Scientists are Creating CRISPR Babies.” MIT Technology Review, November 25.
  • Sataline, S. 2018. “Of Course it’s Not Ethical’: Shock at Gene-Edited Baby Claims.” The Guardian, November 27.
  • Sataline, S., and I. Sample. 2018. “Scientist in China Defends Human Embryo Gene Editing.” The Guardian, November 28.
  • Science Media Centre. 2022. https://www.sciencemediacentre.org.
  • Scully, J. L., and C. Rehmann-Suter. 2001. “When Norms Normalize: The Case of Genetic "Enhancement".” Human Gene Therapy 12: 87–95.
  • Shapin, S. 1988. “Understanding the Merton Thesis.” Isis 79 (4): 594–605.
  • Stephens, N. J., J. T. Lewis, and P. A. Atkinson. 2013. “Closing the Regulatory Regress: Gmp Accreditation in Stem Cell Laboratories.” Sociology of Health & Illness 35 (3): 345–360.
  • Tang, D. 2018. “Chinese Gene-Editing Trial Suspended as Hospital Accuses he Jiankui of forgery.” The Times, November 28.
  • Turkmendag, I. 2018. “It Is Just a “Battery”. Science, Technology.” & Human Values 43 (1): 56–85.
  • Wahlberg, A., D. Dong, P. Song, and Z. Jianfeng. 2021. “The Platforming of Human Embryo Editing: Prospecting “Disease Free” Futures.” New Genetics and Society 40 (4): 367–383.
  • Waltz, M., E. T. Juengst, T. Edwards, et al. 2021. “The View from the Benches: Scientists’ Perspectives on the Uses and Governance of Human Gene-Editing Research.” The CRISPR Journal 4 (4): 609–615.
  • Wang, C., et al. 2019. “Gene-edited Babies: Chinese Academy of Medical Sciences’ Response and Action.” The Lancet 393 (10166): 25–26.
  • WHO. 2019. World Health Organization Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing: Report of the Second Meeting, Geneva, Switzerland, 18–19 March 2019 Geneva, Switzerland, 26–28 August 2019 (No. WHO/SCI/RFH/2019.02).
  • Wilmut, I., A. E. Schnieke, J. McWhir, et al. 1997. “Viable Offspring Derived from Fetal and Adult Mammalian Cells.” Nature 385: 810–813.
  • Yan, S. 2018. “Gene-Editing Babies a Violation of Chinese law, says official.” The Telegraph, November 29.