The global governance of genetic enhancement technologiesJustification, proposals, and challenges

  1. Rueda Etxebarria, Jon 1
  1. 1 Universidad de Granada
    info

    Universidad de Granada

    Granada, España

    ROR https://ror.org/04njjy449

Revista:
Enrahonar: an international journal of theoretical and practical reason

ISSN: 0211-402X 2014-881X

Año de publicación: 2024

Título del ejemplar: Un gir polític al debat sobre la millora genètica

Número: 72

Páginas: 55-71

Tipo: Artículo

DOI: 10.5565/REV/ENRAHONAR.1519 DIALNET GOOGLE SCHOLAR lock_openAcceso abierto editor

Otras publicaciones en: Enrahonar: an international journal of theoretical and practical reason

Resumen

La posibilidad de la mejora genética humana exige una respuesta institucional y, probablemente, la creación de nuevas instituciones. Además, la gobernanza de las tecnologías de mejora genética debe tener un alcance mundial. En este artículo analizo el debate sobre la gobernanza global de la mejora genética humana. Comienzo ofreciendo una justificación filosófica de la necesidad de adoptar un marco global para la gobernanza de las tecnologías que facilitarían la mejora de los rasgos genéticos no patológicos. A continuación, resumo las principales propuestas concretas que han surgido recientemente para gobernar la edición genética a escala planetaria. Por último, expongo algunos impedimentos que limitan el ímpetu en la gobernanza global de la mejora genética.

Referencias bibliográficas

  • ADASHI, Eli Y. & COHEN, I. Glenn (2019). “Heritable Genome Editing: Is a Moratorium Needed?”. JAMA - Journal of the American Medical Association, 322 (2), 104-105. https://doi.org/10.1001/jama.2019.8977
  • AGAR, Nick (2010). Humanity’s end: Why we should reject radical enhancement. Cambridge, Mass.: MIT Press.
  • ALONSO, Marcos (2024). “Post genetic revolution dynamics. How will modified and unmodified humans coexist?”. Enrahonar. An International Journal of Theoretical and Practical Reason, 72, 35-54. https://doi.org/10.5565/rev/enrahonar.1527
  • ALONSO, Marcos & SAVULESCU, Julian (2021). He Jiankui’s gene-editing experiment and the non-identity problem. Bioethics, 35 (6), 563-573. https://doi.org/10.1111/bioe.12878
  • ANNAS, George J.; ANDREWS, Lori B. & ISASI, Rosario M. (2002). “Protecting the endangered human: Toward an international treaty prohibiting cloning and inheritable alterations”. American Journal of Law & Medicine, 28 (2-3), 151-178. https://doi.org/10.4324/9781315254517-18
  • ANOMALY, Jonathan (2020). Creating Future People: The Ethics of Genetic Enhancement. New York: Routledge.
  • BAYLIS, Françoise (2017). “Human germline genome editing and broad societal consensus”. Nature Human Behaviour, 1 (6). https://doi.org/10.1038/s41562-017-0103
  • BAYLIS, Françoise (2019a). Altered inheritance: CRISPR and the ethics of human genome editing. Cambridge, Mass.: Harvard University Press.
  • BAYLIS, Françoise (2019b). “Human Genome Editing: Our Future Belongs to All of Us”. Issues in Science & Technology, 35 (3), 42. Retrieved from https://issues.org/our-future-belongs-to-all-of-us/
  • BOTKIN, Jeffrey R. (2020). “The case for banning heritable genome editing”. Genetics in Medicine, 22 (3), 487-489. https://doi.org/10.1038/s41436-019-0696-6
  • BUCHANAN, Allen (2011). Beyond humanity? The ethics of biomedical enhancement. Oxford: Oxford University Press.
  • BUCHANAN, Allen; BROCK, Dan W.; DANIELS, Norman & WIKLER, Daniels (2001). From chance to choice: Genetics and justice. Cambridge: Cambridge University Press.
  • CADIGAN, R. Jean; WALTZ, Margaret; HENDERSON, Gail E.; CONLEY, John M.; DAVIS, Arlene M.; MAJOR, Rami & JUENGST, Eric T. (2022). “Scientists’ Views on Scientific Self-Governance for Human Genome Editing Research”. Human Gene Therapy, 33, 1157-1163. https://doi.org/10.1089/hum.2022.087
  • CHARO, R. Alta (2019). “Rogues and regulation of germline editing”. New England Journal of Medicine, 380 (10), 976-980.
  • COHEN, Jon (2019a). “Moratorium for germline editing splits biologists”. Science, 363 (6432), 1130-1131. https://doi.org/10.1126/science.363.6432.1130
  • COHEN, Jon (2019b). “The untold story of the ‘circle of trust’ behind the world’s first gene-edited babies”. Science. https://doi.org/10.1126/science.aay9400
  • CONLEY, John M.; CADIGAN, R. Jean; DAVIS, Arlene M.; JUENGST, Eric T.; KUCZYNSKI, Kriste; MAJOR, Rami; STANCIL, Hayley; VILLA-PALOMINO, Julio; WALTZ, Margaret & HENDERSON, Gail E. (2023). “The promise and reality of public engagement in the governance of human genome editing research”. The American Journal of Bioethics, 1-8.
  • COUNCIL OF EUROPE (1999). Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (ETS No. 164), (1999) (testimony of UE Council of Europe). Retrieved from https://www.coe.int/en/web/conventions/full-list?module=treaty-detail&treatynum=164
  • CRITCHLEY, Christine; NICOL, Dianne; BRUCE, Gordana; WALSHE, Jarrod; TRELEAVEN, Tamara & TUCH, Bernard (2019). “Predicting public attitudes toward gene editing of germlines: The impact of moral and hereditary concern in human and animal applications”. Frontiers in Genetics, 10, 1-14. https://doi.org/10.3389/fgene.2018.00704
  • CYRANOSKI, David (2018). “CRISPR-baby scientist fails to satisfy critics”. Nature, 564 (7734), 13-15.
  • CYRANOSKI, David & LEDFORD, Heidi (2018). “Genome-edited baby claim provokes international outcry”. Nature, 563 (7731), 607-609.
  • DE MIGUEL BERIAIN, Íñigo; ARMAZA ARMAZA, Emilio & DUARDO-SÁNCHEZ, Aliuska (2019). “Human germline editing is not prohibited by the Oviedo Convention: An argument”. Medical Law International, 19 (2-3), 226-232. https://doi.org/10.1177/0968533219862590
  • DEGRAZIA, David (2012). Creation Ethics: Reproduction, Genetics, and Quality of Life. Oxford: Oxford University Press.
  • DOUDNA, Jennifer A. & STERNBERG, Samuel H. (2017). A Crack in Creation: Gene Editing and the Unthinkable Power to Control Evolution. Boston: Mariner Books.
  • DRYZEK, John S.; NICOL, Dianne; NIEMEYER, Simon; PEMBERTON, Sonya; CURATO, Nicole; BÄCHTIGER, André; BATTERHAM, Philip; BEDSTED, Bjørn; BURALL, Simon; BURGESS, Michael; BURGIO, Gaetan; CASTELFRANCHI, Yurij; CHNEIWEISS, Hervé; CHURCH, George; CROSSLEY, Merlin; DE VRIES, Jantina; FAROOQUE, Mahmud; HAMMOND, Marit; HE, Baogang … VERGNE, Antoine (2020). “Global citizen deliberation on genome editing”. Science, 369 (6509), 1435-1437. https://doi.org/10.1126/SCIENCE.ABB5931
  • GASKELL, George; BARD, Imre; ALLANSDOTTIR, Agnes; DA CUNHA, Rui V.; EDUARD, Peter; HAMPEL, Juergen; HILDT, Elisabeth; HOFMAIER, Christian; KRONBERGER, Nicole; LAURSEN, Sheena; MEIJKNECHT, Anna; NORDAL, Salvör; QUINTANILHA, Alexandre; REVUELTA, Gema; SALADIÉ, Núria; SÁNDOR, Judit; SANTOS, Julio B.; SEYRINGER, Simone; SINGH, Ilina … ZWART, Hub (2017). “Public views on gene editing and its uses”. Nature Biotechnology, 35 (11), 1021-1023. https://doi.org/10.1038/nbt.3958
  • GLANNON, Walter (2001). Genes and Future People: Philosophical Issues in Human Genetics. Boulder: Westview Press.
  • GORDON, Jon W. (1999). “Genetic enhancement in humans”. Science, 283 (5410), 2023-2024. https://doi.org/10.1126/science.283.5410.2023
  • GYNGELL, Christopher; DOUGLAS, Tom & SAVULESCU, Julian (2017). “The Ethics of Germline Gene Editing”. Journal of Applied Philosophy, 34 (4), 498-513. https://doi.org/10.1111/japp.12249
  • HABERMAS, Jürgen (2003). The future of human nature. Cambridge: Polity Press.
  • HARRIS, John (1992). Wonderwoman and Superman: the ethics of human biotechnology. Oxford: Oxford University Press.
  • HARRIS, John (2007). Enhancing Evolution: The Ethical Case for Making Better People. Princeton, N. J.: Princeton University Press.
  • HOUGH, Soren H. & AJETUNMOBI, Ayokunmi (2019). “A CRISPR Moratorium Isn’t Enough: We Need a Boycott”. The CRISPR Journal, 2 (6), 343-345. https://doi.org/10.1089/crispr.2019.0041
  • HUMANITY+ (2021). Transhumanist FAQ 3.0. Retrieved from https://www.humanityplus.org/transhumanist-faq
  • HURLBUT, J. Benjamin; JASANOFF, Sheila; SAHA, Krishanu; AHMED, Aziza; APPIAH, Anthony; BARTHOLET, Elizabeth; BAYLIS, Françoise; BENNETT, Gaymon; CHURCH, George; COHEN, I. Glenn; DALEY, George; FINNERAN, Kevin; HURLBUT, William; JAENISCH, Rudolf; LWOFF, Laurence; KIMES, John Paul; MILLS, Peter; MOSES, Jacob; PARK, Buhm Soon … WOOPEN, Christiane (2018). “Building Capacity for a Global Genome Editing Observatory: Conceptual Challenges”. Trends in Biotechnology, 36 (7), 639-641. https://doi.org/10.1016/j.tibtech.2018.04.009
  • INTERNATIONAL BIOETHICS COMMITTEE OF UNESCO (2015). Report of the IBC on Updating Its Reflection on the Human Genome and Human Rights. Retrieved from https://unesdoc.unesco.org/ark:/48223/pf0000233258
  • JASANOFF, Sheila & HURLBUT, J. Benjamin (2018). “A global observatory for gene editing”. Nature, 555 (7697), 435-437.
  • JASANOFF, Sheila; HURLBUT, J. Benjamin & SAHA, Krishanu (2015). CRISPR democracy: Gene editing and the need for inclusive deliberation. Issues in Science and Technology, 32 (1), 25-32.
  • JUENGST, Eric T. (2017). “Crowdsourcing the Moral Limits of Human Gene Editing?”. Hastings Center Report, 47 (3), 15-23. https://doi.org/10.1002/hast.701
  • JUENGST, Eric T. & MOSELEY, Daniel (2019). “Human Enhancement”. In: Stanford Encyclopedia of Philosophy (Edward N.). Retrieved from https://plato.stanford.edu/archives/sum2019/entries/enhancement/
  • KAAN, Terry; XAFIS, Vicki; SCHAEFER, G. Owen; ZHU, Yujia; LABUDE, Markus K. & CHADWICK, Ruth (2021). “Germline genome editing: Moratorium, hard law, or an informed adaptive consensus?”. PLOS Genetics, 17 (9), e10. https://doi.org/10.1371/journal.pgen.1009742
  • LANDER, Eric S.; BAYLIS, Françoise; ZHANG, Feng; CHARPENTIER, Emmanuelle; BERG, Paul; BOURGAIN, Catherine; FRIEDRICH, Bärbel; JOUNG, J. Keith; LI, Jinsong & LIU, David (2019). “Adopt a moratorium on heritable genome editing”. Nature, 567 (7747), 165-168.
  • LANPHIER, Edward; URNOV, Fyodor; HAECKER, Sarah Ehlen; WERNER, Michael & SMOLENSKI, Joanna (2015). “Don’t edit the human germ line”. Nature, 519 (7544), 410-411.
  • LIANG, Puping; XU, Yanwen; ZHANG, Xiya; DING, Chenhui; HUANG, Rui; ZHANG, Zhen; LV, Jie; XIE, Xiaowei; CHEN, Yuxi; LI, Yujing; SUN, Ying; BAI, Yaofu; SONGYANG, Zhou; MA, Wenbin; ZHOU, Canquan & HUANG, Junjiu (2015). “CRISPR/Cas9-mediated gene editing in human tripronuclear zygotes”. Protein and Cell, 6 (5), 363-372. https://doi.org/10.1007/s13238-015-0153-5
  • MACASKILL, William (2022). What we owe the future. New York: Hachette Book Group.
  • MACER, Darryl (2012). “Ethical consequences of the positive views of enhancement in Asia”. Health Care Analysis, 20 (4), 385-397. https://doi.org/10.1007/s10728-012-0230-3
  • MACINTOSH, Kerry Lynn (2019). “Heritable Genome Editing and the Downsides of a Global Moratorium”. The CRISPR Journal, 2 (5), 272-279. https://doi.org/10.1089/crispr.2019.0016
  • MALMQVIST, Erik (2014). “Reproductive choice, enhancement, and the moral continuum argument”. Journal of Medicine and Philosophy (United Kingdom), 39 (1), 41-54. https://doi.org/10.1093/jmp/jht058
  • MARCHANT, Gary E. (2021). “Global Governance of Human Genome Editing: What Are the Rules?”. Annual Review of Genomics and Human Genetics, 22, 385-405. https://doi.org/10.1146/annurev-genom-111320-091930
  • MARTÍN, Daniel; RUEDA, Jon; EARP, Brian D. & HANNIKAINEN, Ivar R. (2023). “Normality and the Treatment ‑ Enhancement Distinction”. Neuroethics, 16, 13. https://doi.org/10.1007/s12152-023-09519-0
  • MCCAUGHEY, Tristan; SANFILIPPO, Paul G.; GOODEN, George E. C.; BUDDEN, David M.; FAN, Li; FENWICK, Eva; REES, Gwyneth; MACGREGOR, Casimir; SI, Lei; CHEN, Christine; LIANG, Helena Hai; BALDWIN, Timothy; PÉBAY, Alice & HEWITT, Alex W. (2016). “A global social media survey of attitudes to human genome editing”. Cell Stem Cell, 18 (5), 569-572. https://doi.org/10.1016/j.stem.2016.04.011
  • MEHLMAN, Maxwell J. (2003). Wondergenes: Genetic enhancement and the future of society. Bloomington: Indiana University Press.
  • MONTOLIU, Lluís; MERCHANT, Jennifer; HIRSCH, François; ABECASSIS, Marion; JOUANNET, Pierre; BAERTSCHI, Bernard; SARRAUSTE DE MENTHIÈRE, Cyril & CHNEIWEISS, Hervé (2018). “ARRIGE Arrives: Toward the Responsible Use of Genome Editing”. The CRISPR Journal, 1 (2), 128-129. https://doi.org/10.1089/crispr.2018.29012.mon
  • ORD, Toby (2020). The precipice: Existential risk and the future of humanity. New York: Hachette Books.
  • PARENS, Erik (1998). “Is Better Always Good? The Enhancement Project”. Hastings Center Report, 28 (1), S1-S17.
  • PEW RESEARCH CENTER (2018). Public views of gene editing for babies depend on how it would be used. Retrieved from https://www.pewresearch.org/science/2018/07/26/public-views-of-gene-editing-for-babies-depend-on-how-it-would-be-used/
  • PORTER, Allen (2017). “Bioethics and transhumanism”. Journal of Medicine and Philosophy, 42 (3), 237-260.
  • RESNIK, David B. (2000). “The moral significance of the therapy-enhancement distinction in human genetics”. Cambridge Quarterly of Healthcare Ethics, 9 (3), 365-377. https://doi.org/10.1017/s0963180100903086
  • ROBERTSON, John A. (1994). Children of choice: Freedom and the new reproductive technologies. Princeton, N. J.: Princeton University Press.
  • RODRÍGUEZ-ALCÁZAR, Javier & BERMEJO-LUQUE, Lilian (2024). “Human enhancement technologies and the arguments for cosmopolitanism”. Enrahonar. An International Journal of Theoretical and Practical Reason, 72, 15-33. https://doi.org/10.5565/rev/enrahonar.1489
  • RUEDA, Jon (2020). “De la libertad morfológica transhumanista a la corporalidad posthumana: convergencias y divergencias”. Isegoria, 63, 311-328. https://doi.org/10.3989/ISEGORIA.2020.063.02
  • RUEDA, Jon (2022a). “From Self-Determination to Offspring-Determination? Reproductive Autonomy, Procrustean Parenting, and Genetic Enhancement”. Theoria (Sweden), 88 (6), 1086-1110. https://doi.org/10.1111/theo.12349
  • RUEDA, Jon (2022b). “Genetic enhancement, human extinction, and the best interests of posthumanity”. Bioethics, October 2021, 1-10. https://doi.org/10.1111/bioe.13085
  • RUEDA, Jon (2023). “The ethics of doing human enhancement ethics”. Futures, 153, 103236. https://doi.org/10.1016/j.futures.2023.103236
  • RUEDA, Jon; GARCÍA-BARRANQUERO, Pablo & LARA, Francisco (2021). “Doctor, please make me freer: Capabilities enhancement as a goal of medicine”. Medicine, Health Care and Philosophy, 24, 409-419. https://doi.org/10.1007/s11019-021-10016-5
  • RUEDA, Jon; PUGH, Jonathan & SAVULESCU, Julian (2023). “The morally disruptive future of reprogenetic enhancement technologies”. Trends in Biotechnology, 41 (5), 589-592. https://doi.org/10.1016/j.tibtech.2022.10.007
  • SAHA, Krishanu; HURLBUT, J. Benjamin; JASANOFF, Sheila; AHMED, Aziza; APPIAH, Anthony; BARTHOLET, Elizabeth; BAYLIS, Françoise; BENNETT, Gaymon; CHURCH, George; COHEN, I. Glenn; DALEY, George; FINNERAN, Kevin; HURLBUT, William; JAENISCH, Rudolf; LWOFF, Laurence; KIMES, John Paul; MILLS, Peter; MOSES, Jacob; PARK, Buhm Soon … WOOPEN, Christiane (2018). “Building Capacity for a Global Genome Editing Observatory: Institutional Design”. Trends in Biotechnology, 36 (8), 741-743. https://doi.org/10.1016/j.tibtech.2018.04.008
  • SAVULESCU, Julian; PUGH, Jonathan; DOUGLAS, Tom & GYNGELL, Christopher (2015). “The moral imperative to continue gene editing research on human embryos”. Protein and Cell, 6 (7), 476-479. https://doi.org/10.1007/s13238-015-0184-y
  • SAVULESCU, Julian & SINGER, Peter (2019). “An ethical pathway for gene editing”. Bioethics, 33 (2), 221-222. https://doi.org/10.1111/bioe.12570
  • SCHAEFER, G. Owen; LABUDE, Markus K.; ZHU, Yujia; FOO, Roger Sik-Yin & XAFIS, Vicki (2021). “International Reporting Mechanism for Unethical Germline Gene Editing Experiments Is Needed”. Trends in Biotechnology, 39 (5), 427-430. https://doi.org/10.1016/j.tibtech.2020.10.001
  • SCHEUFELE, Dietram A.; XENOS, Michael A.; HOWELL, Emily L.; ROSE, Kathleen M.; BROSSARD, Dominique & HARDY, Bruce W. (2017). “U.S. attitudes on human genome editing”. Science, 357 (6351), 553-554. https://doi.org/10.1126/science.aan3708
  • SCHWARTZ, Peter H. (2005). “Defending the distinction between treatment and enhancement”. American Journal of Bioethics, 5 (3), 17-19. https://doi.org/10.1080/15265160591002755
  • SHOZI, Bonginkosi; KAMWENDO, Tamanda; KINDERLERER, Julian; THALDAR, Donrich W.; TOWNSEND, Baverley & BOTES, Marietjie (2021). “Future of global regulation of human genome editing: A South African perspective on the WHO Draft Governance Framework on Human Genome Editing”. Journal of Medical Ethics, 48 (3), 165-168. https://doi.org/10.1136/medethics-2020-106863
  • SHOZI, B. & THALDAR, Donrich (2023). “Promoting equality in the governance of heritable human genome editing through Ubuntu: Reflecting on a South African public engagement study”. The American Journal of Bioethics, 1-7.
  • SILVER, Lee M. (1997). Remakind Eden: How Genetic Engineering and Cloning Will Transform the American Family. New York: HarperCollins Publishers.
  • SO, Derek; KLEIDERMAN, Erika; TOURÉ, Seydina B. & JOLY, Yann (2017). “Disease resistance and the definition of genetic enhancement”. Frontiers in Genetics, 8 (APR), 1-6. https://doi.org/10.3389/fgene.2017.00040
  • UNESCO (1997). The Universal Declaration on the Human Genome and Human Rights. Retrieved from https://www.ohchr.org/en/instruments-mechanisms/instruments/universal-declaration-human-genome-and-human-rights
  • YU, Hanzhi; XUE, Lan; BARRANGOU, Rodolphe; CHEN, Shaowei & HUANG, Ying (2021). “Toward inclusive global governance of human genome editing”. Proceedings of the National Academy of Sciences of the United States of America, 118 (47), 1-5. https://doi.org/10.1073/pnas.2118540118