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Comparative Legal Frameworks of Pre-Implantation Genetic Interventions

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Comparative Legal Frameworks of Pre-Implantation Genetic Interventions COMPARATIVE LEGAL FRAMEWORKS OF PRE-IMPLANTATION GENETIC INTERVENTIONS A Dissertation Completed in Satisfaction of the Requirement for the Degree of Doctor of Juridical Science (S.J.D.) in Comparative Constitutional Law Supervisor: PROFESSOR JUDIT MARCELLA SÁNDOR S.J.D. Candidate: LAU PIN LEAN CEU eTD Collection Legal Studies Department Central European University, Budapest November 2018 Comparative Legal Frameworks in Pre-Implantation Genetic Interventions Save as provided herein, this dissertation contains no material accepted for any other instution and no materials previously written and/or published by another person unless otherwise acknowledged. *The author of this dissertation has reproduced (in Chapter I, pp. 89–96) some parts of her previous publication, as follows:- Pin Lean Lau, ‘The Genius and the Imbecile: Disentangling the ‘Legal’ Framework of Autonomy in Modern Liberal Eugenics, from Non-Therapeutic Gene Enhancement Use in Gene Editing Technologies’ (2018) Vol. 4, Current Debates in Social Sciences, (International Relations and Law), ISBN No: 978-1-912503-05-6, IJOPEC London s/Lau Pin Lean CEU eTD Collection i Comparative Legal Frameworks in Pre-Implantation Genetic Interventions ABSTRACT This dissertation focuses on one of the major developments in science and technology in recent years. Breakthough research outcomes in the field of human genetic interventions are now viewed as possible solutions to eradicating genetic diseases and enhancing mechanisms of human immunity to viruses or diseases. In the process of seeking to achieve this goal, what is being discovered is a Pandora’s Box of other possible applications of genetic interventions for human beings, and much more so if we consider its possible pairing at the embryonic level with pre-implantation genetic diagnosis (PGD). The possibility of altering DNA containing the genetic information of life, at the pre-implantation embryonic level, and its immutable consequences, legal and ethical, raises significant questions that make it not only relevant, but urgent, to embed into the fundamental tailoring of legal systems. The engagement with such technologies is imbued with the plurality of human choice and selection, making concerns about eugenic outcomes a reasonable one. The aim of this dissertation, therefore, is to navigate towards a deeper understanding of possible legal approaches that may be deployed to govern future pre-implantation genetic interventions. Through a methodological comparison of legal frameworks in the United States, the United Kingdom, Australia, Malaysia and Thailand, the dissertation explores the underlying philosophical, socio-legal, cultural and ethical reasonings (in each jurisdiction) to not only justify legal genetic interventions, but to also critically understand the points at which different governments are willing to regulate biomedical technologies (‘the entry points of regulation’). By breaking through barriers to bring together considerations for a more internationalized global biomedical approach, this dissertation emphasizes the necessity to unlearn three key biases and misconceptions (which may also overlap with the key findings). These include: firstly, the divorcing of eugenics understanding from a specific historical event, and a reinterpretation of eugenics in contemporary settings; secondly, dismantling the narrative of fear and disconcert about these kinds of biomedical technologies; and thirdly, revisiting and employing an alternative understanding of universality in the international human rights corpus. Using the backdrop of international biomedical laws, individual constitutional systems and a variety of regulatory approaches that may be suitable to govern future pre-implantation genetic interventions, the findings in this dissertation advances three major points. Firstly, to reinterpret the meaning of eugenics in contemporary settings, and to make distinctions that would differentiate practices that may have eugenic outcomes, especially where pre-implantation genetic interventions are concerned. Secondly, to focus on strong governance, stable legal and/or regulatory frameworks and concise international outlooks in formulating the governance of future pre-implantation genetic interventions. Besides the traditional command-and-control top-down governance through positivist black letter law (which may be inadequate to deal with the advancement of technologies), the dissertation proposes the use of variable regulatory approaches (in complementarity with existing frameworks) that take inspiration from contemporary regulatory designs, such as responsible research innovation and legal foresighting, smart CEU eTD Collection regulation and responsive regulation; as well as adaptive governance, and agency models. Thirdly, to use the proposed ‘entry points of regulation’ to update the definition of universality in internationalized human rights corpus, and a renegotiation of a common shared values system, that may be incorporated into different constitutional systems. ii Comparative Legal Frameworks in Pre-Implantation Genetic Interventions ACKNOWLEDGMENTS I give thanks:- To my supervisor, Judit, without whom this dissertation would not be possible. You are my pillar of strength and support, the one who teaches me that dreams are within reach, who gently tethers me and guides me down to Earth when I’ve wandered too far into the clouds, building castles in my mind. For your ever-constant belief in me, even when I sometimes do not believe in myself, your deeply meaningful and constructive feedback, and your unwavering and supportive mentorship; you are the strong and brilliant woman I hope to be someday (and in my own unique way). No words are enough to express my gratitude for your support, kindness and friendship; To my mother, Champi, who encouraged me to follow my dreams, spread my wings and seek my passion beyond my comfort zone, taught me how to be strong, resilient, free-spirited and embracing of the world and my own abilities. My mother, who remains my rock when I navigate the simultaneous tumults and thrills of this earthly life, who loves and cares for me, raised my own daughter in my absence from home, my always cheerleader and protector. There are no words I can write to express my deepest love and gratitude to you; To my late father, KB, whom I will always love until the end of my days. Sometimes when the days are bleak, I remember that I have already gone through the hardest thing I have ever had to deal with in my life: losing you on Earth. So everything else that comes my way will simply be a walk in the park, a walk I have taken, and will continue to take with you in my heart, slaying naysayers and demons along the path, in the way you’ve always taught me how to. You are forever missed and loved for all of eternity, and I wish you were here today to see the woman I’ve become; To my daughter, Emilie, the center of my universe, the only human being who will ever know what my heart sounds like from the inside. You, the keeper of my heart and soul, have taught me so much more than I expected to learn; for the love you bestow upon me, and the privilege I’ve been given to be your mother. I love you beyond the infinite universe, the stars, our earthly mortal coil, and when forgetfulness and the death of our earthly forms set in, I love you still; To my brother, Chin Wei, whose strong and silent presence throughout reminds me why I am grateful to you. Thank you for your subdued together-ness, the cute dog and puppy videos you send me to brighten up my day, and our ‘almost’ twin thing; To my wonderful friends from home, and those in my adopted home who have become my family. All of you, whose names are forever etched in my heart (you know who you are), I love that the breadth and depth of oceans and skies between us has never changed what we mean to each other; every one of you beyond the confines of our geographical borders, I am thankful to CEU eTD Collection call you my dear friends. You are the ones who’ve seen me at my worst and crazy, and still stuck on with unconditional love, support, encouragement and a whole lot of laughs. For your everlasting friendship, bad advice, good advice, the hearty meals you’ve fed me, the caffeine-fueled discussions on life, family, the allure of warm weather and zombie apocalypses. What a special place in my heart you all occupy forevermore; iii Comparative Legal Frameworks in Pre-Implantation Genetic Interventions To my colleagues in the Legal Studies Department, my brothers and sisters now, thank you for the love, the camaraderie, the endless flow of coffee, chocolates and cookies in our lab, the fellowship, the privilege has been mine to know each and every one of you. For my doctoral programme directors, Professor Csilla Kollonay-Lehoczky and Professor Mathias Möschel, for your words of wisdom, kindness, continuous support and understanding. To Professors Károly Bárd, Renáta Uitz, Tibor Tajti, Eszter Polgári, and Petra Bárd, all of whom have extended advice and support in one way or other. To the effervescent Ms. Lea Tilless, for all your support, advice, easy friendship and encouragement throughout these years. Thank you for always reminding me to keep a sparkle in my eyes! To Ms. Natalia Nyikes, who always has time to give me hugs and spur me on with words of wisdom and encouragement. To the security personnel who’ve quietly watched over our safety at all hours of the day, to the baristas at Estretto for little daily perks of sweetness and joy, to the lovely ladies
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