La governança global de les tecnologies de millora genètica: justificació, propostes i desafiaments
Resum
La possibilitat de la millora genètica humana exigeix una resposta institucional i, probablement, la creació de noves institucions. A més, la governança de les tecnologies de millora genètica ha de tenir un abast mundial. En aquest article analitzo el debat sobre la governança global de la millora genètica humana. Començo oferint una justificació filosòfica de la necessitat d’adoptar un marc global per a la governança de les tecnologies que facilitarien la millora dels trets genètics no patològics. A continuació, resumeixo les principals propostes concretes que han sorgit recentment per governar l’edició genètica a escala planetària. Finalment, exposo alguns impediments que limiten l’ímpetu en la governança global de la millora genètica.
Paraules clau
CRISPR, bioètica global, GenÈtica, governança tecnològica, polítiques de la millora humanaReferències
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
Publicades
Com citar
Descàrregues
Drets d'autor (c) 2024 Jon Rueda Etxebarria
Aquesta obra està sota una llicència internacional Creative Commons Reconeixement 4.0.
