Hacia una bioética de segunda generación: fundamentos normativos para la edición genética de la línea germinal humana


Contenido principal del artículo



La acelerada expansión de la biotecnología ha reconfigurado el vínculo entre conocimiento, poder y moralidad, generando dilemas inéditos en torno a la edición genética de la línea germinal y revelando la insuficiencia del marco principialista clásico para afrontar desafíos intergeneracionales y planetarios. En ese marco, el objetivo del presente artículo es formular un marco normativo-operativo de bioética de segunda generación que supere las limitaciones del principialismo y responda a las implicaciones éticas, jurídicas y sociales de la manipulación genética hereditaria. Los resultados evidencian tres transformaciones estructurales en la arquitectura moral contemporánea: el tránsito del antropocentrismo hacia una ontología relacional de la vida, de la autonomía individual a la corresponsabilidad intergeneracional y de la moral normativa a una ética de la incertidumbre. Se concluye que la bioética de segunda generación redefine la función de la ética en la biotecnología, orientándola hacia la sostenibilidad moral, la justicia genética y la responsabilidad global como fundamentos para una gobernanza anticipatoria del futuro biotecnológico.

edición genética germinal, responsabilidad intergeneracional, gobernanza científica, ética de la incertidumbre, justicia genética

Andorno, Roberto. “The Right Not to Know: An Autonomy Based Approach”. Journal of Medical Ethics 30, núm. 5 (octubre de 2004): 435-39. https://doi.org/10.1136/jme.2002.001578. DOI: https://doi.org/10.1136/jme.2002.001578

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, núms. 2-3 (mayo de 2020): 143-65. https://doi.org/10.1177/0098858820933492. DOI: https://doi.org/10.1177/0098858820933492

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

Beauchamp, Tom L., y James F. Childress. Principles of biomedical ethics. 8a ed. New York: Oxford University Press, 2019.

Beck, Ulrich. Risk Society: Towards a New Modernity. Vol. 17. Theory, Culture & Society. London: SAGE, 1992.

Beck, Ulrich. World Risk Society. Cambridge: Wiley, 1999.

Benatar, Solomon, Abdallah S. Daar, y Peter A. Singer. “Global health ethics: the rationale for mutual caring”. En Global Health and Global Health Ethics, 1a ed., editado por Solomon Benatar y Gillian Brock, 129-40. Cambridge University Press, 2011. https://doi.org/10.1017/CBO9780511984792.012. DOI: https://doi.org/10.1017/CBO9780511984792.012

Boldt, Joachim, y Elisa Orru. “Towards a Unified List of Ethical Principles for Emerging Technologies. An Analysis of Four European Reports on Molecular Biotechnology and Artificial Intelligence”. Sustainable Futures 4 (2022): 100086. https://doi.org/10.1016/j.sftr.2022.100086. DOI: https://doi.org/10.1016/j.sftr.2022.100086

Bostrom, Nick. “In Defense of Posthuman Dignity”. Bioethics 19, núm. 3 (junio de 2005): 202-14. https://doi.org/10.1111/j.1467-8519.2005.00437.x. DOI: https://doi.org/10.1111/j.1467-8519.2005.00437.x

Braidotti, Rosi. The Posthuman. Cambridge: John Wiley & Sons, 2013.

Brent, Robert J. “Cost-Benefit Analysis versus Cost-Effectiveness Analysis from a Societal Perspective in Healthcare”. International Journal of Environmental Research and Public Health 20, núm. 5 (marzo de 2023): 4637. https://doi.org/10.3390/ijerph20054637. DOI: https://doi.org/10.3390/ijerph20054637

Buchanan, Allen E. Beyond Humanity?: The Ethics of Biomedical Enhancement. Uehiro Series in Practical Ethics. Oxford: Oxford University Press, 2011. DOI: https://doi.org/10.1093/acprof:oso/9780199587810.001.0001

Chadwick, Ruth. “Gene Editing: An Ethical Disruptor?” Bioethics 33, núm. 1 (enero de 2019): 3-3. https://doi.org/10.1111/bioe.12563. DOI: https://doi.org/10.1111/bioe.12563

Clouser, K. Danner, y Bernard Gert. “A Critique of Principlism”. Journal of Medicine and Philosophy 15, núm. 2 (abril de 1990): 219-36. https://doi.org/10.1093/jmp/15.2.219. DOI: https://doi.org/10.1093/jmp/15.2.219

Cosens, Barbara, J. B. Ruhl, Niko Soininen, Lance Gunderson, Antti Belinskij, Thorsten Blenckner, Alejandro E. Camacho, et al. “Governing Complexity: Integrating Science, Governance, and Law to Manage Accelerating Change in the Globalized Commons”. Proceedings of the National Academy of Sciences 118, núm. 36 (septiembre de 2021): e2102798118. https://doi.org/10.1073/pnas.2102798118. DOI: https://doi.org/10.1073/pnas.2102798118

Council of Europe. “Convention on Human Rights and Biomedicine”. 1999. https://www.coe.int/en/web/conventions/full-list?module=treaty-detail&treatynum=164.

Daniels, Norman. Just Health: Meeting Health Needs Fairly. 1a ed. Cambridge University Press, 2007. https://doi.org/10.1017/CBO9780511809514. DOI: https://doi.org/10.1017/CBO9780511809514

Doudna, Jennifer A. “The Promise and Challenge of Therapeutic Genome Editing”. Nature 578, núm. 7794 (febrero de 2020): 229-36. https://doi.org/10.1038/s41586-020-1978-5. DOI: https://doi.org/10.1038/s41586-020-1978-5

Doudna, Jennifer A., y Emmanuelle Charpentier. “The New Frontier of Genome Engineering with CRISPR-Cas9”. Science 346, núm. 6213 (noviembre de 2014): 1258096. https://doi.org/10.1126/science.1258096. DOI: https://doi.org/10.1126/science.1258096

Douglas, Heather E. Science, Policy, and the Value-Free Ideal. Pittsburgh: University of Pittsburgh Press, 2009. DOI: https://doi.org/10.2307/j.ctt6wrc78

Douglas, Mary. Risk and Blame: Essays in Cultural Theory. Vol. 12. Collected Works. London: Routledge, 1994.

Engelhardt, Hugo Tristram. The Foundations of Bioethics. New York: Oxford University Press, 1996. DOI: https://doi.org/10.1093/oso/9780195057362.001.0001

Esposito, Roberto. Bíos: Biopolitics and Philosophy. Editado y traducido por Timothy C. Campbell. Posthumanities Series. Minneapolis: University of Minnesota Press, 2008.

Finnis, John. Fundamentals of Ethics. Washington, DC: Georgetown University Press, 1983.

Foucault, Michel. The History of Sexuality: An Introduction. Vol. 1. New York: Pantheon Books, 1978.

Fukuyama, Francis. Our Posthuman Future: Consequences of the Biotechnology Revolution. London: Profile, 2002.

Funtowicz, Silvio O., y Jerome R. Ravetz. “Science for the Post-Normal Age”. Futures 25, núm. 7 (septiembre de 1993): 739-55. https://doi.org/10.1016/0016-3287(93)90022-L. DOI: https://doi.org/10.1016/0016-3287(93)90022-L

Gilligan, Carol. In a Different Voice: Psychological Theory and Women’s Development. 2nd ed. Cambridge, MA: Harvard University Press, 1982.

Gillon, Raanan Evelyn Zvi. “Medical Ethics: Four Principles plus Attention to Scope”. BMJ 309, núm. 6948 (julio de 1994): 184-184. https://doi.org/10.1136/bmj.309.6948.184. DOI: https://doi.org/10.1136/bmj.309.6948.184

Gosseries, Axel. “On Future Generations’ Future Rights*”. Journal of Political Philosophy 16, núm. 4 (diciembre de 2008): 446-74. https://doi.org/10.1111/j.1467-9760.2008.00323.x. DOI: https://doi.org/10.1111/j.1467-9760.2008.00323.x

Greely, Henry T. “CRISPR’d Babies: Human Germline Genome Editing in the ‘He Jiankui Affair’*”. Journal of Law and the Biosciences 6, núm. 1 (octubre de 2019): 111-83. https://doi.org/10.1093/jlb/lsz010. DOI: https://doi.org/10.1093/jlb/lsz010

Griffiths, Paul E. “Genetic Information: A Metaphor In Search of a Theory”. Philosophy of Science 68, núm. 3 (septiembre de 2001): 394-412. https://doi.org/10.1086/392891. DOI: https://doi.org/10.1086/392891

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

Haraway, Donna J. Staying with the Trouble: Making Kin in the Chthulucene. Experimental Futures. Durham, NC: Duke University Press, 2016. DOI: https://doi.org/10.2307/j.ctv11cw25q

Have, Henk ten. Global Bioethics: An Introduction. London: Routledge, 2016. DOI: https://doi.org/10.4324/9781315648378

Heyer, Wolf-Dietrich, Kirk T. Ehmsen, y Jie Liu. “Regulation of Homologous Recombination in Eukaryotes”. Annual Review of Genetics 44, núm. 1 (diciembre de 2010): 113-39. https://doi.org/10.1146/annurev-genet-051710-150955. DOI: https://doi.org/10.1146/annurev-genet-051710-150955

Hofmann, Bjørn. “Limits to Human Enhancement: Nature, Disease, Therapy or Betterment?” BMC Medical Ethics 18, núm. 1 (diciembre de 2017): 56. https://doi.org/10.1186/s12910-017-0215-8. DOI: https://doi.org/10.1186/s12910-017-0215-8

Hsu, Patrick D., Eric S. Lander, y Feng Zhang. “Development and Applications of CRISPR-Cas9 for Genome Engineering”. Cell 157, núm. 6 (junio de 2014): 1262-78. https://doi.org/10.1016/j.cell.2014.05.010. DOI: https://doi.org/10.1016/j.cell.2014.05.010

Hurlbut, J. Benjamin. “Limits of Responsibility: Genome Editing, Asilomar, and the Politics of Deliberation”. Hastings Center Report 45, núm. 5 (septiembre de 2015): 11-14. https://doi.org/10.1002/hast.484. DOI: 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.

Jasin, Maria, y James E. Haber. “The Democratization of Gene Editing: Insights from Site-Specific Cleavage and Double-Strand Break Repair”. DNA Repair 44 (agosto de 2016): 6-16. https://doi.org/10.1016/j.dnarep.2016.05.001. DOI: https://doi.org/10.1016/j.dnarep.2016.05.001

Jeffrey, Allison, y Holly Thorpe. “Relational Ethics of Care in Pandemic Research: Vulnerabilities, Intimacies, and Becoming Together-Apart”. Qualitative Inquiry 30, núm. 1 (enero de 2024): 101-13. https://doi.org/10.1177/10778004231163497. DOI: https://doi.org/10.1177/10778004231163497

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, núm. 6096 (agosto de 2012): 816-21. https://doi.org/10.1126/science.1225829. DOI: https://doi.org/10.1126/science.1225829

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

Jonsen, Albert R. The Birth of Bioethics. Oxford: Oxford University Press, 1998. DOI: https://doi.org/10.1093/oso/9780195103250.001.0001

Jonsen, Albert R., y Stephen Toulmin. The Abuse of Casuistry: A History of Moral Reasoning. Berkeley: University of California Press, 1988. DOI: https://doi.org/10.1525/9780520352797

Kant, Immanuel. Groundwork of the Metaphysics of Morals. Editado y traducido por Mary J. Gregor y Jens Timmermann. Cambridge Texts in the History of Philosophy. Cambridge: Cambridge University Press, 2012.

Kass, Leon. Life, Liberty and the Defense of Dignity: The Challenge for Bioethics. Encounter Broadsides Series. New York: Encounter Books, 2002.

Keller, Evelyn Fox. The Century of the Gene. Cambridge, MA: Harvard University Press, 2000.

Keller, Evelyn Fox. The Mirage of a Space between Nature and Nurture. Durham, NC: Duke University Press, 2010. DOI: https://doi.org/10.1215/9780822392811

Kourany, Janet A. Philosophy of Science after Feminism. Studies in Feminist Philosophy. Oxford: Oxford University Press, 2010. DOI: https://doi.org/10.1093/acprof:oso/9780199732623.001.0001

Latour, Bruno. Facing Gaia: Eight Lectures on the New Climatic Regime. Traducido por Catherine Porter. Cambridge: Polity Press, 2017.

Leopold, Aldo. A Sand County Almanac: With Other Essays on Conservation from Round River. 2nd ed. Galaxy Books. Oxford: Oxford University Press, 1968.

Lieber, Michael R. “The Mechanism of Double-Strand DNA Break Repair by the Nonhomologous DNA End-Joining Pathway”. Annual Review of Biochemistry 79, núm. 1 (junio de 2010): 181-211. https://doi.org/10.1146/annurev.biochem.052308.093131. DOI: https://doi.org/10.1146/annurev.biochem.052308.093131

Lindahl, Tomas. “Instability and Decay of the Primary Structure of DNA”. Nature 362, núm. 6422 (abril de 1993): 709-15. https://doi.org/10.1038/362709a0. DOI: https://doi.org/10.1038/362709a0

Liu, X. Shawn, Hao Wu, Xiong Ji, Yonatan Stelzer, Xuebing Wu, Szymon Czauderna, Jian Shu, Daniel Dadon, Richard A. Young, y Rudolf Jaenisch. “Editing DNA Methylation in the Mammalian Genome”. Cell 167, núm. 1 (septiembre de 2016): 233-247.e17. https://doi.org/10.1016/j.cell.2016.08.056. DOI: https://doi.org/10.1016/j.cell.2016.08.056

López, Guillem, y José Luis Pinto. “QALY Maximization and the Social Optimum”. Revista Hacienda Pública Española 242, núm. 3 (septiembre de 2022): 111-27. https://doi.org/10.7866/HPE-RPE.22.3.5. DOI: https://doi.org/10.7866/HPE-RPE.22.3.5

Mojica, Francisco, César Díez-Villaseñor, Jesús García-Martínez y Cristóbal Almendros. “Short Motif Sequences Determine the Targets of the Prokaryotic CRISPR Defence System”. Microbiology 155, núm. 3 (marzo de 2009): 733-40. https://doi.org/10.1099/mic.0.023960-0. DOI: https://doi.org/10.1099/mic.0.023960-0

Naess, Arne. “The Shallow and the Deep, Long‐range Ecology Movement. A Summary∗”. Inquiry 16, núms. 1-4 (enero de 1973): 95-100. https://doi.org/10.1080/00201747308601682. DOI: https://doi.org/10.1080/00201747308601682

Nuffield Council on Bioethics. Genome Editing and Human Reproduction: Social and Ethical Issues. London: Nuffield Council on Bioethics, 2018. https://www.nuffieldbioethics.org/publication/genome-editing-and-human-reproduction-social-and-ethical-issues/. DOI: https://doi.org/10.1515/jwiet-2019-0012

O’Neill, Onora. Autonomy and Trust in Bioethics. Gifford Lectures. Cambridge: Cambridge University Press, 2002.

Owen, Richard, Phil Macnaghten y Jack Stilgoe. “Responsible Research and Innovation: From Science in Society to Science for Society, with Society”. Science and Public Policy 39, núm. 6 (diciembre de 2012): 751-60. https://doi.org/10.1093/scipol/scs093. DOI: https://doi.org/10.1093/scipol/scs093

Petersen, Alan. The Politics of Bioethics. Routledge Studies in Science, Technology and Society. London: Routledge, 2011.

Pogge, Thomas W. World Poverty and Human Rights. Cambridge: Polity, 2008.

Potter, Van Rensselaer. Bioethics: Bridge to the Future. Prentice-Hall Biological Science Series. Englewood Cliffs, NJ: Prentice-Hall, 1971.

Resnik, David B. “Ethical Issues in Field Trials of Genetically Modified Disease‐Resistant Mosquitoes”. Developing World Bioethics 14, núm. 1 (abril de 2014): 37-46. https://doi.org/10.1111/dewb.12011. DOI: https://doi.org/10.1111/dewb.12011

Rhodes, Rosamond. “Bioethics: Looking Forward and Looking Back”. The American Journal of Bioethics 13, núm. 1 (enero de 2013): 13-16. https://doi.org/10.1080/15265161.2013.747318. DOI: https://doi.org/10.1080/15265161.2013.747318

Ricoeur, Paul. Oneself as Another. Gifford Lectures. Chicago: University of Chicago Press, 1992.

Rose, Nikolas. The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century. Princeton: Princeton University Press, 2007. DOI: https://doi.org/10.1515/9781400827503

Salama, Mahmoud, Vladimir Isachenko, Evgenia Isachenko, Gohar Rahimi, Peter Mallmann, Lynn M. Westphal, Marcia C. Inhorn y Pasquale Patrizio. “Cross Border Reproductive Care (CBRC): A Growing Global Phenomenon with Multidimensional Implications (a Systematic and Critical Review)”. Journal of Assisted Reproduction and Genetics 35, núm. 7 (julio de 2018): 1277-88. https://doi.org/10.1007/s10815-018-1181-x. DOI: https://doi.org/10.1007/s10815-018-1181-x

Sancar, Aziz. “DNA Repair in Humans”. Annual Review of Genetics 29, núm. 1 (diciembre de 1995): 69-105. https://doi.org/10.1146/annurev.ge.29.120195.000441. DOI: https://doi.org/10.1146/annurev.genet.29.1.69

Sandel, Michael J. The Case Against Perfection: Ethics in the Age of Genetic Engineering. Cambridge, MA: Harvard University Press, 2009. DOI: https://doi.org/10.2307/j.ctvjz80mc

Santos, Boaventura de Sousa. Epistemologies of the South: Justice Against Epistemicide. London: Routledge, 2015. DOI: https://doi.org/10.4324/9781315634876

Savulescu, Julian. “Procreative Beneficence: Why We Should Select the Best Children”. Bioethics 15, núms. 5-6 (octubre de 2001): 413-26. https://doi.org/10.1111/1467-8519.00251. DOI: https://doi.org/10.1111/1467-8519.00251

Singer, Peter. Practical Ethics. 3a ed. Cambridge University Press, 2011. https://doi.org/10.1017/CBO9780511975950. DOI: https://doi.org/10.1017/CBO9780511975950

Sloterdijk, Peter. You Must Change Your Life. Cambridge: Polity Press, 2014.

Stilgoe, Jack. Experiment Earth: Responsible Innovation in Geoengineering. The Earthscan Science in Society Series. London: Routledge, 2015. DOI: https://doi.org/10.4324/9781315849195

Stirling, Andrew. “Risk, Precaution and Science: Towards a More Constructive Policy Debate: Talking Point on the Precautionary Principle”. EMBO Reports 8, núm. 4 (abril de 2007): 309-15. https://doi.org/10.1038/sj.embor.7400953. DOI: https://doi.org/10.1038/sj.embor.7400953

Sunder Rajan, Kaushik. Biocapital: The Constitution of Postgenomic Life. Durham, NC: Duke University Press, 2006. DOI: https://doi.org/10.1515/9780822388005

Torgersen, Helge, y Daniela Fuchs. “Technology Assessment as a Myth Buster: Deconstructing Myths around Emerging Technologies”. Journal of Responsible Innovation 4, núm. 2 (mayo de 2017): 118-37. https://doi.org/10.1080/23299460.2017.1320157. DOI: https://doi.org/10.1080/23299460.2017.1320157

UNESCO. “Universal Declaration on the Human Genome and Human Rights”. 1997. https://www.unesco.org/en/legal-affairs/universal-declaration-human-genome-and-human-rights.

United Nations. “United Nations Conference on Environment and Development”. Rio de Janeiro, 1992. https://www.un.org/en/conferences/environment/rio1992.

Weismann, August. The Germ-plasm: A Theory of Heredity. Traducido por William Newton Parker y Harriet Rönnfeldt. Contemporary Science Series. New York: Scribner’s, 1893. DOI: https://doi.org/10.5962/bhl.title.25196

Wilkinson, Dominic. “The Charlie Gard Case, and the Ethics of Obstructing International Transfer of Seriously Ill Children”. Pediatrics 146, núm. Supplement_1 (agosto de 2020): S54-59. https://doi.org/10.1542/peds.2020-0818K. DOI: https://doi.org/10.1542/peds.2020-0818K

Xue, Chaoyou, y Eric C. Greene. “DNA Repair Pathway Choices in CRISPR-Cas9-Mediated Genome Editing”. Trends in Genetics 37, núm. 7 (julio de 2021): 639-56. https://doi.org/10.1016/j.tig.2021.02.008. DOI: https://doi.org/10.1016/j.tig.2021.02.008

Detalles del artículo

Ramos-Zaga, F. (2025). Hacia una bioética de segunda generación: fundamentos normativos para la edición genética de la línea germinal humana. En-Claves Del Pensamiento, (39), 158–189. https://doi.org/10.46530/ecdp.v0i39.787

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Fernando Ramos-Zaga, Universidad Privada del Norte

Fernando A. Ramos-Zaga es magister en gerencia social por la Pontificia Universidad Católica del Perú, investigador y docente en la Universidad Privada del Norte, con trabajo centrado en bioética, regulación de la tecnología y economía del comportamiento.