Desafíos bioéticos de la intervención genética: una crítica al principialismo en la era del CRISPR-Cas9

Fernando A. Ramos-Zaga

doi:10.5294/dika.2026.35.1.2

Authors

Fernando A. Ramos-Zaga Author Private University of the North https://orcid.org/0000-0001-6301-9460

DOI:

https://doi.org/10.5294/dika.2026.35.1.2

Keywords:

Bioethics, CRISPR-Cas9, genetic engineering, genetic human, human rights, individual autonomy

Abstract

In a landscape shaped by the rapid advancement of biomedical technologies, the possibility of intervening in the human germline introduces not only technical challenges but also an ontological horizon in which clinical decisions reshape the genetic legacy of individuals who do not yet exist. Against this background, the present article critically examines the limitations of principlist bioethics in relation to genetic editing through CRISPR-Cas9. The findings reveal that principlism retains structural constraints, insofar as it depends on categories centered on present subjects, individual autonomy, informed consent, and the assessment of immediate risks. Consequently, the emergence of CRISPR-Cas9 calls for a bioethical reformulation that expands and relocates that framework within a normative architecture capable of addressing transgenerational and globally distributed dilemmas. From this perspective, the analysis supports the need to move toward an ethics of constraint oriented to protecting future autonomy and the dignity of generations yet to come.

Downloads

Download data is not yet available.

References

Abdelhady, Ahmed M., Jonathan A. Phillips, Yuanxin Xu y Mark Stroh, “Clinical pharmacology and translational considerations in the development of CRISPR‐based therapies”, Clinical Pharmacology & Therapeutics 114, 3 (2023), pp. 591-603. https://doi.org/10.1002/cpt.3000

Adashi, Eli Y., Leroy B. Walters y Jerry A. Menikoff, “The Belmont Report at 40: Reckoning with time”, American Journal of Public Health 108, 10 (2018), pp. 1345-1348. https://doi.org/10.2105/AJPH.2018.304580

Addis, Michela, Wided Batat, S. Sinem Atakan, Caroline G. Austin, Danae Manika, Paula C. Peter y Lane Peterson, “Food experience design to prevent unintended consequences and improve well-being”, Journal of Service Research 25, 1 (2022), pp. 143-159. https://doi.org/10.1177/10946705211057593

Aguilera-Cobos, Lorena, María Piedad Rosario-Lozano, Angela Ponce-Polo, Juan Antonio Blasco-Amaro y David Epstein, “Barriers for the evaluation of advanced therapy medicines and their translation to clinical practice: Umbrella review”, Health Policy 126, 12 (2022), pp. 1248-1255. https://doi.org/10.1016/j.healthpol.2022.10.007

Akatsuka, Kyoko, Taichi Hatta, Tsutomu Sawai y Misao Fujita, “Public attitudes in Japan toward the reproductive use of gametes derived from human-induced pluripotent stem cells”, Future Science OA 7, 10 (2021), pp. 1-12. https://doi.org/10.2144/fsoa-2021-0065

Akram, Fatima, Sania Sahreen, Farheen Aamir, Ikram ul Haq, Kausar Malik, Memoona Imtiaz, Waqas Naseem, Narmeen Nasir y Hafiza Mariam Waheed, “An insight into modern targeted genome-editing technologies with a special focus on CRISPR/Cas9 and its applications”, Molecular Biotechnology 65, 2 (2023), pp. 227-242. https://doi.org/10.1007/s12033-022-00501-4

Aliyu, Alhaji A., “Public health ethics and the COVID-19 pandemic”, Annals of African Medicine 20, 3 (2021), pp. 157-160. https://doi.org/10.4103/aam.aam_80_20

Angelis, Aris, Huseyin Naci y Allan Hackshaw, “Recalibrating health technology assessment methods for cell and gene therapies”, Pharmacoeconomics 38, 12 (2020), pp. 1297-1308. https://doi.org/10.1007/s40273-020-00956-w

Annas, George J., “Genome editing 2020: Ethics and human rights in germline editing in humans and gene drives in mosquitoes”, American Journal of Law & Medicine 46, 2-3 (2020), pp. 143-165. https://doi.org/10.1177/0098858820933492

Arellano, Lucía, Pau Alcubilla y Lina Leguízamo, “Ethical considerations in informed consent”, en Miroslav Radenkovic (ed.), Ethics - Scientific Research, Ethical Issues, Artificial Intelligence and Education, London, IntechOpen, 2023, pp. 1-15. https://doi.org/10.5772/intechopen.1001319

Armsby, Alyssa J., Yvonne Bombard, Nanibaa’ A. Garrison, Bonnie L. Halpern-Felsher y Kelly E. Ormond, “Attitudes of members of genetics professional societies toward human gene editing”, CRISPR Journal 2, 5 (2019), pp. 331-339. https://doi.org/10.1089/crispr.2019.0020

Baranzke, Heike, “‘Sanctity-of-Life’—A bioethical principle for a right to life?”, Ethical Theory and Moral Practice 15, 3 (2012), pp. 295-308. https://doi.org/10.1007/s10677-012-9369-0

Bayarsaikhan, Dorjsuren, Lou Tessier y Aviva Ron, “Universal health coverage and social health protection: Policy relevance to health system financing reforms”, International Social Security Review 75, 2 (2022), pp. 75-95. https://doi.org/10.1111/issr.12295

Baylis, Françoise, Altered Inheritance: CRISPR and the Ethics of Human Genome Editing, Cambridge, Harvard University Press, 2019. https://doi.org/10.4159/9780674241954

Beauchamp, Tom y James Childress, Principles of Biomedical Ethics, Oxford, Oxford University Press, 1979.

Beauchamp, Tom y James Childress, “Principles of biomedical ethics: Marking its fortieth anniversary”, American Journal of Bioethics 19, 11 (2019), pp. 9-12. https://doi.org/10.1080/15265161.2019.1665402

Boggio, Andrea, Cesare P. R. Romano y Jessica Almqvist, Human Germline Genome Modification and the Right to Science: A Comparative Study of National Laws and Policies, Cambridge, Cambridge University Press, 2020. https://doi.org/10.1017/9781108759083

Calder, Todd, “Evil and feminist ethics: A modified cardian theory of evil”, Social Theory and Practice 48, 3 (2022), pp. 457-484. https://doi.org/10.2147/JPR.S162926

Carvalho, Ana Sofia, Sandra Martins Pereira, António Jácomo, Susana Magalhães, Joana Araújo, Pablo Hernández-Marrero, Carlos Costa Gomes y Michael Schatman, “Ethical decision making in pain management: A conceptual framework”, Journal of Pain Research 11 (2018), pp. 967-976. https://doi.org/10.2147/JPR.S162926

Chan, Gary K. Y., “AI employment decision-making: Integrating the equal opportunity merit principle and explainable AI”, AI & Society (2022), pp. 1-14. https://doi.org/10.1007/s00146-022-01532-w

Chan, Hui Yun, “Legal responses to the challenges of making advance directives”, en Advance Directives: Rethinking Regulation, Autonomy & Healthcare Decision-Making, Cham, Springer International Publishing, 2018, pp. 35-91. https://doi.org/10.1007/978-3-030-00976-2_3

Cohen-Mansfield, Jiska, “Who is informed and who uninformed? Addressing the legal barriers to progress in dementia research and care”, Israel Journal of Health Policy Research 8, 1 (2019), pp. 1-8. https://doi.org/10.1163/15718093-bja10080

Conditi, Noemi, “Regulating heritable human genome editing: Drawing the line between legitimate and controversial use”, European Journal of Health Law 29, 3-5 (2022), pp. 435-457. https://doi.org/10.1163/15718093-bja10080

Delhove, Juliette, Ivana Osenk, Ivanka Prichard y Martin Donnelley, “Public acceptability of gene therapy and gene editing for human use: A systematic review”, Human Gene Therapy 31, 1-2 (2020), pp. 20-46. https://doi.org/10.1089/hum.2019.197

Dimond, Bridgit, “Complementary medicine and the law: Some unanswered questions”, Complementary Therapies in Medicine 3, 4 (1995), pp. 248-250. https://doi.org/10.1016/S0965-2299(95)80081-6

Dive, Lisa y Ainsley J. Newson, “Reconceptualizing autonomy for bioethics”, Kennedy Institute of Ethics Journal 28, 2 (2018), pp. 171-203. https://doi.org/10.1353/ken.2018.0013

Dogaru, Bombonica Gabriela y Constantin Munteanu, “The role of hydrogen sulfide (H2S) in epigenetic regulation of neurodegenerative diseases: A systematic review”, International Journal of Molecular Sciences 24, 16 (2023), pp. 1-20. https://doi.org/10.3390/ijms241612555

Dongen, Jeanne E. van, Johanna T. W. Berendsen, Renske D. M. Steenbergen, Rob M. F. Wolthuis, Jan C. T. Eijkel y Loes I. Segerink, “Point-of-care CRISPR/Cas nucleic acid detection: Recent advances, challenges and opportunities”, Biosensors and Bioelectronics 166 (2020), pp. 1-14. https://doi.org/10.1016/j.bios.2020.112445

Foulkes, Alexandra L., Takahiro Soda, Martilias Farrell, Paola Giusti-Rodríguez y Gabriel Lázaro-Muñoz, “Legal and ethical implications of CRISPR applications in psychiatry”, North Carolina Law Review 97, 5 (2019), pp. 1359-1380.

Funtowicz, Silvio O. y Jerome R. Ravetz, “Science for the post-normal age”, Futures 25, 7 (1993), pp. 739-755. https://doi.org/10.1016/0016-3287(93)90022-L

Gosseries, Axel, “On future generations’ future rights”, Journal of Political Philosophy 16, 4 (2008), pp. 446-474. https://doi.org/10.1111/j.1467-9760.2008.00323.x

Greene, Daniel, Megan J. Palmer y David A. Relman, “Motivating proactive biorisk management”, Health Security 21, 1 (2023), pp. 46-60. https://doi.org/10.1089/hs.2022.0101

Habermas, Jürgen, The Future of Human Nature, Cambridge, Polity Press, 2003.

Huang, Kun, Daniel Zapata, Yan Tang, Yong Teng y Yamin Li, “In vivo delivery of CRISPR-Cas9 genome editing components for therapeutic applications”, Biomaterials 291 (2022), pp. 1-12. https://doi.org/10.1016/j.biomaterials.2022.121876

Hurlbut, J. Benjamin, “Limits of responsibility: Genome editing, Asilomar, and the politics of deliberation”, Hastings Center Report 45, 5 (2015), pp. 11-14. https://doi.org/10.1002/hast.484

Jasanoff, Sheila, The Ethics of Invention: Technology and the Human Future, New York, W. W. Norton & Company, 2016.

Jiang, Chunyang, Xiaohui Lin y Zhigang Zhao, “Applications of CRISPR/Cas9 technology in the treatment of lung cancer”, Trends in Molecular Medicine 25, 11 (2019), pp. 1039-1049. https://doi.org/10.1016/j.molmed.2019.07.007

Jinek, Martin, Krzysztof Chylinski, Ines Fonfara, Michael Hauer, Jennifer A. Doudna y Emmanuelle Charpentier, “A programmable dual-RNA-guided DNA endonuclease in adaptive bacterial immunity”, Science 337, 6096 (2012), pp. 816-821. https://doi.org/10.1126/science.1225829

Jonas, Hans, The Imperative of Responsibility: In Search of an Ethics for the Technological Age, Chicago, University of Chicago Press, 1984. https://doi.org/10.7208/chicago/9780226850337.001.0001

Kalokairinou, L., H. C. Howard, S. Slokenberga, E. Fisher, M. Flatscher-Thöni, M. Hartlev, R. van Hellemondt et al., “Legislation of direct-to-consumer genetic testing in Europe: A fragmented regulatory landscape”, Journal of Community Genetics 9, 2 (2018), pp. 117-132. https://doi.org/10.1007/s12687-017-0344-2

Kamp, J. A., B. B. L. G. Lemmens, R. J. Romeijn, S. C. Changoer, R. van Schendel y M. Tijsterman, “Helicase Q promotes homology-driven DNA double-strand break repair and prevents tandem duplications”, Nature Communications 12, 1 (2021), pp. 1-12. https://doi.org/10.1038/s41467-021-27408-z

Karlovsky, Matthew E., “How to avoid and deal with pelvic mesh litigation”, Current Urology Reports 17, 8 (2016), pp. 1-6. https://doi.org/10.1007/s11934-016-0613-3

Kearns, Alan J., “The principle of double effect and external whistleblowing in nursing”, Nursing Outlook 70, 6 (2022), pp. 807-819. https://doi.org/10.1016/j.outlook.2022.09.001

Krimsky, Sheldon, “Breaking the germline barrier in a moral vacuum”, Accountability in Research 26, 6 (2019), pp. 351-368. https://doi.org/10.1080/08989621.2019.1644171

Kucnerowicz, Karolina, Agata Pietrzak, Witold Cholewiński, Piotr Martenka, Andrzej Marszałek, Ewa Burchardt y Erwin Strzesak, “The quality-adjusted life-years in the oncological patients’ health-related quality of life”, Scientific Reports 12, 1 (2022), pp. 1-7. https://doi.org/10.1038/s41598-022-17942-1

Lässig, Michael, Ville Mustonen y Armita Nourmohammad, “Steering and controlling evolution—from bioengineering to fighting pathogens”, Nature Reviews Genetics 24 (2023), pp. 1-17. https://doi.org/10.1038/s41576-023-00623-8

Loike, John D. y Alan Kadish, “Outer limits of biotechnologies: A Jewish perspective”, Rambam Maimonides Medical Journal 9, 1 (2018), pp. 1-10. https://doi.org/10.5041/RMMJ.10328

Love-Koh, James, Paul Schneider, Simon McNamara, Tim Doran y Nils Gutacker, “Decomposition of quality-adjusted life expectancy inequalities by mortality and health-related quality of life dimensions”, Pharmacoeconomics 41, 7 (2023), pp. 831-841. https://doi.org/10.1007/s40273-023-01264-9

Martella, Andrea y David I. Fisher, “Regulation of gene expression and the elucidative role of CRISPR-based epigenetic modifiers and CRISPR-induced chromosome conformational changes”, The CRISPR Journal 4, 1 (2021), pp. 43-57. https://doi.org/10.1089/crispr.2020.0108

Mollaki, Vasiliki, “Ethical challenges in organoid use”, BioTech 10, 3 (2021), pp. 1-12. https://doi.org/10.3390/biotech10030012

Motloba, Pagollang, “Non-maleficence - a disremembered moral obligation”, SADJ 74, 1 (2019), pp. 40-42. https://doi.org/10.17159/2519-0105/2019/v74no1a7

Niemiec, Emilia y Heidi Carmen Howard, “Ethical issues related to research on genome editing in human embryos”, Computational and Structural Biotechnology Journal 18 (2020), pp. 887-896. https://doi.org/10.1016/j.csbj.2020.03.014

Odhiambo, Apondi J., Lisa Forman, Laron E. Nelson, Patricia O’Campo y Daniel Grace, “Legislatively excluded, medically uninsured and structurally violated: The social organization of HIV healthcare for African, Caribbean and Black immigrants with precarious immigration status in Toronto, Canada”, Qualitative Health Research 32, 5 (2022), pp. 847-865. https://doi.org/10.1177/10497323221082958

Okechukwu, Chidiebere Emmanuel, “Deciphering and manipulating the epigenome for the treatment of Parkinson’s and Alzheimer’s disease”, MGM Journal of Medical Sciences 8, 2 (2021), pp. 171-180. https://doi.org/10.4103/mgmj.mgmj_90_20

Pandit, Prasasti, “On the context of benevolence: The significance of emotion in moral philosophy”, Interdisciplinary Description of Complex Systems 19, 1 (2021), pp. 47-63. https://doi.org/10.7906/indecs.19.1.5

Persaud, Anitra, Stacy Desine, Katherine Blizinsky y Vence L. Bonham, “A CRISPR focus on attitudes and beliefs toward somatic genome editing from stakeholders within the sickle cell disease community”, Genetics in Medicine 21, 8 (2019), pp. 1726-1734. https://doi.org/10.1038/s41436-018-0409-6

Piersanti, Valeria, Francesca Consalvo, Fabrizio Signore, Alessandro Del Rio y Simona Zaami, “Surrogacy and ‘procreative tourism’. What does the future hold from the ethical and legal perspectives?”, Medicina 57, 1 (2021), pp. 1-12. https://doi.org/10.3390/medicina57010047

Pogge, Thomas W., World Poverty and Human Rights: Cosmopolitan Responsibilities and Reforms, Cambridge, Polity, 2007.

Prainsack, Barbara y Alena Buyx, Solidarity in Biomedicine and Beyond, Cambridge, Cambridge University Press, 2017. https://doi.org/10.1017/9781139696593

Puustinen, Tuulia, Pauliina Krigsholm y Heidi Falkenbach, “Land policy conflict profiles for different densification types: A literature-based approach”, Land Use Policy 123 (2022), pp. 1-12. https://doi.org/10.1016/j.landusepol.2022.106405

Qiqige, Wulan, Yang Yue y Huang Zhe, “Research on the regulatory framework of advanced therapies in the European union and the United States”, Asian Journal of Social Pharmacy 18, 2 (2023), pp. 98-106.

Rahman, Mohammad Mijanur y Trygve O. Tollefsbol, “Targeting cancer epigenetics with CRISPR-dCAS9: Principles and prospects”, Methods 187 (2021), pp. 77-91. https://doi.org/10.1016/j.ymeth.2020.04.006

Rawls, John, A Theory of Justice, Cambridge, Harvard University Press, 2009.

Sahel, Deepak Kumar, Lalitkumar K. Vora, Aishwarya Saraswat, Saurabh Sharma, Jasmin Monpara, Anisha A. D’Souza, Deepakkumar Mishra et al., “CRISPR/Cas9 genome editing for tissue‐specific in vivo targeting: Nanomaterials and translational perspective”, Advanced Science 10, 19 (2023), pp. 1-18. https://doi.org/10.1002/advs.202207512

Sanchez-Lara, Pedro A., Joseph Nathanson y Leonard A. Valentino, “Gene therapy in hemophilia: Latest developments”, en Advances in Hemophilia Treatment, Cham, Springer International Publishing, 2022, pp. 155-165. https://doi.org/10.1007/978-3-030-93990-8_18

Sandler, Ronald, Ethics and Emerging Technologies, Basingstoke, Palgrave Macmillan, 2014. https://doi.org/10.1057/9781137349088

Savulescu, Julian y Guy Kahane, “The moral obligation to create children with the best chance of the best life”, Bioethics 23, 5 (2009), pp. 274-290. https://doi.org/10.1111/j.1467-8519.2008.00687.x

Siauciunaite, Rima, Nicholas S. Foulkes, Viola Calabrò y Daniela Vallone, “Evolution shapes the gene expression response to oxidative stress”, International Journal of Molecular Sciences 20, 12 (2019), pp. 1-15. https://doi.org/10.3390/ijms20123040

Sturme, Mark H. J., Jan Pieter van der Berg, Lianne M. S. Bouwman, Adinda de Schrijver, Ruud A. de Maagd, Gijs A. Kleter y Evy Battaglia-de Wilde, “Occurrence and nature of off-target modifications by CRISPR-Cas genome editing in plants”, ACS Agricultural Science & Technology 2, 2 (2022), pp. 192-201. https://doi.org/10.1021/acsagscitech.1c00270

Syding, Linn Amanda, Petr Nickl, Petr Kasparek y Radislav Sedlacek, “CRISPR/Cas9 epigenome editing potential for rare imprinting diseases: A review”, Cells 9, 4 (2020), pp. 1-18. https://doi.org/10.3390/cells9040993

Townsend, Beverley A., “Human genome editing: How to prevent rogue actors”, BMC Medical Ethics 21, 1 (2020), pp. 1-8. https://doi.org/10.1186/s12910-020-00527-w

Van Assche, Kristof, Kasper Raus, Bert Vanderhaegen y Sigrid Sterckx, “‘Capacity for discernment’ and euthanasia on minors in Belgium”, Medical Law Review 27, 2 (2019), pp. 242-266. https://doi.org/10.1093/medlaw/fwy027

Wang, Leifan, Lijun Shang y Weiwen Zhang, “Human genome editing after the ‘CRISPR babies’: The double-pacing problem and collaborative governance”, Journal of Biosafety and Biosecurity 5, 1 (2023), pp. 8-13. https://doi.org/10.1016/j.jobb.2022.12.003

Wiesing, Urban, “The Hippocratic Oath and the Declaration of Geneva: Legitimisation attempts of professional conduct”, Medicine, Health Care and Philosophy 23, 1 (2020), pp. 81-86. https://doi.org/10.1007/s11019-019-09910-w

Wilkinson, Dominic y Julian Savulescu, “After Charlie Gard: Ethically ensuring access to innovative treatment”, Lancet 390, 10094 (2017), pp. 540-542. https://doi.org/10.1016/S0140-6736(17)32125-6

Woods, Simon y Vibeke Graven, “Intentions and the doctrine of double effect”, en Philosophy and Medicine, Cham, Springer International Publishing, 2020, pp. 169-179. https://doi.org/10.1007/978-3-030-40033-0_12