Re-coding the ‘corrupt’ code: CRISPR-Cas9 interventions in human germ line editing CRISPR-Cas9, Germline Intervention, Human Cognition, Human Rights, International Regulation Master Thesis Tilburg University- Law and Technology 2018-19 Tilburg Institute for Law, Technology, and Society (TILT) October 2019 Student: Srishti Tripathy Supervisors: Prof. Dr. Robin Pierce SRN: 2012391 Dr. Emre Bayamlioglu ANR: 659785 Re-coding the ‘corrupt’ code CRISPR-Cas9, Germline Intervention, Human Cognition, Human Rights, International Regulation This page is intentionally left blank 2 Re-coding the ‘corrupt’ code CRISPR-Cas9, Germline Intervention, Human Cognition, Human Rights, International Regulation 3 Re-coding the ‘corrupt’ code CRISPR-Cas9, Germline Intervention, Human Cognition, Human Rights, International Regulation Table of Contents CHAPTER 1: Introduction .............................................................................................................. 6 1.1 Introduction and Review - “I think I’m crazy enough to do it” ......................................................................... 6 1.2 Research Question and Sub Questions .......................................................................................................................... 9 1.4 Methodology ............................................................................................................................................................................. 9 1.4 Thesis structure: .................................................................................................................................................................. 10 1.5 Relevance and Significance ............................................................................................................................................ 11 CHAPTER 2- Understanding the ‘algorithms’: How genes are related to cognition? .. 13 2.1 Introduction ....................................................................................................................................................... 13 2.2 Genetics and cognition .................................................................................................................................. 14 2.3 Cultivating Post-Human society: Why this scare? .............................................................................. 19 2.4 Conclusion .......................................................................................................................................................... 20 CHAPTER 3: Metamorphosis into a delusional state ........................................................... 22 3.1 Introduction ........................................................................................................................................................................... 22 3.2 Genetic manipulation for autonomous human ..................................................................................................... 22 3.3 The right to mental self-determination .................................................................................................................... 28 3.4 Creatures of Mind: Cognitive liberty .......................................................................................................................... 29 3.5 Conclusion ............................................................................................................................................................................... 31 CHAPTER 4: Human Rights and the curious case of CRISPR-Cas9 germline application 32 4.1 Introduction ........................................................................................................................................................................... 32 4.2 “Everyone has the right to freedom of thought, conscience and religion……..”: ..................................... 37 4.3 Conclusion ............................................................................................................................................................................... 39 CHAPTER 5: International schema............................................................................................ 41 5.1 Introduction ........................................................................................................................................................................... 41 5.2 Universal Declaration on Human Genome and Human Rights ...................................................................... 42 5.3 Legal background ............................................................................................................................................................... 44 5.4 Oviedo Convention .............................................................................................................................................................. 48 5.5 Review oversight .................................................................................................................................................................. 50 5.6 Lack of legal solutions in the international regulatory landscape .............................................................. 50 5.7 Conclusion ............................................................................................................................................................................... 52 CONCLUSION AND AFTERWARD: predict the future: Avert the danger ........................... 55 Bibliography............................................................................................................................................................. 58 Books ................................................................................................................................................................................................ 58 Articles and Journals ................................................................................................................................................................. 58 Statues and legislations ........................................................................................................................................................... 63 Blogs.................................................................................................................................................................................................. 64 Caselaws .......................................................................................................................................................................................... 64 4 Re-coding the ‘corrupt’ code CRISPR-Cas9, Germline Intervention, Human Cognition, Human Rights, International Regulation 5 Re-coding the ‘corrupt’ code CRISPR-Cas9, Germline Intervention, Human Cognition, Human Rights, International Regulation CHAPTER 1: Introduction To defeat the evil should we become a greater evil?1 1.1 Introduction and Review - “I think I’m crazy enough to do it”2 Humanity has survived the ravages of time; it has evolved, adapted and modified itself to suit its own need and the needs of society. In order to study and chart the evolutionary course of humanity, gene plays a singular arch role in it, but does the study of it also give us the liberty to edit/ modify/ engineer it? Through biotechnology that can edit or intervene human genome, 3 is not a new phenomenon, but the grandest of them all, called Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR-Cas9) allows to cut and paste with precision into the coding sequence of basis of a single gene, the grandeur of this technology is its simplicity and applicative accuracy,4 that has the world polarized between it being a boon or a bane. 2019, ushered a new era of gene editing, germline modification, not theoretical but in practice, when He Jiankui, a genome-editing researcher at the Southern University of Science and Technology of China in Shenzhen, announced that He has successfully delivered twins from genetically modified embryo. 5 This edit was performed to make them and their future off spring HIV- resistant. 6 What followed was not just limited to international outcry in the scientific community,7 but a series of further research on the edited gene (CCR5),8 that led to exponential insights to the linkages of gene and human cognition.9 Recently a Russian researcher Denis 1 Lelouch Vi Britannia, Code Geass 2Russian Molecular biologist Denis Rebrikov, on genetically editing human embryo. 3 Energy USDof, “Biotechnology And The Human Genome Project” (Serving Science and Society in the New Millenium: DOE's Biological and Environmental Research Program. January 1, 1998) <https://www.ncbi.nlm.nih.gov/books/NBK230604/> accessed May 14, 2019 4 Michael Specter, The Gene Hackers, NEW YORKER (Nov. 16, 2015), 1 http://www.newyorker.com/nagazine/2015/11/16/the-gene-hackers ("CRISPR has made a difficult process cheap and reliable. It's incredibly precise."). Accessed on January 14, 2019 5 Cyranoski D and Ledford H, “Genome-Edited Baby Claim Provokes International Outcry” (Nature News November 26, 2018) <https://www.nature.com/articles/d41586-018-07545-0> accessed May 13, 2019 6 Ibid 7 Ibid 8 Ibid 9 Regalado A, “China's CRISPR Twins Might Have Had Their Brains Inadvertently Enhanced” (MIT Technology Review February 22, 2019) <https://www.technologyreview.com/s/612997/the-crispr-twins-had-their-brains- altered/> accessed April 10, 2019 6 Re-coding the ‘corrupt’ code