Some bioethical and legal considerations on the Geneva Declaration on Heritable Human Genome Editing in the light of International Statements
DOI:
https://doi.org/10.7203/CEFD.44.19383Abstract
The recent Geneva Statement on Heritable Human Genome Editing denounces the central position that both Science and Bioethics have occupied to date, stating that both maintain a decidedly favourable position with regard to this bioengineering, all of which highlights the pressing need to redirect the debate towards the field of law. The aim of this paper is to analyse in detail the considerations set out in this document, raising questions about some of them, and highlighting the advisability of articulating a multidisciplinary consensus led by human rights, particularly those of the most vulnerable groups.
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ALKORTA IDIAKEZ, I.; “Nuevos límites del derecho a procrear”, Derecho Privado y Constitución, núm. 20, 2006, pp. 9- 61.
ANDORNO, R.; BAYLIS, F.; DARNOVSKY, M.; DICKENSON, D.; HAKER, H.; HASSON, K.; et. al.; “Geneva Statement on Heritable Human Genome Editing: The Need for Course Correction”, Trends in Biotechnology, Vol. 38, No. 4, 2020, pp. 351-354.
ANNAS, G. J.; ANDREWS, L. B.; ISASI, R. M.; “Protecting the endangered human: toward an international treaty prohibiting cloning and inheritable alterations”, American Journal of Law and Medicine, Vol. 28, No. 2-3, 2002, pp. 151- 178.
BAYLIS, F.; DARNOVSKY, M.; HASSON, K.; KRAHN, T. M.; “Human Germline and Heritable Genome Editing: The Global Policy Landscape”, The CRISPR Journal, Vol. 3, No. 5, 2020, pp. 365-377.
BELLVER CAPELLA, V., “Hijos de múltiples padres: del reemplazo mitocondrial a los gametos sintéticos”, TRIVIÑO CABALLERO, R.; RODRÍGUEZ-ARIAS, D. (eds.); Cuestiones de vida y muerte. Perspectivas éticas y jurídicas en torno al nacer y el morir, Madrid, Plaza y Valdés, 2016, pp. 15-38.
BELLVER CAPELLA, V.; “La revolución de la edición genética mediante CRISPR-Cas9 y los desafíos éticos y regulatorios que comporta”, Cuadernos de Bioética, núm. 90, vol. 27, 2016, pp. 223-240.
CAMPS, V.; “¿Qué hay de malo en la eugenesia?”, Isegoría, núm. 27, 2002, pp. 55-71.
CAPLAN, A.; “Getting serious about the challenge of regulating germline gene therapy”, PLoS Biology, Vol. 17, No. 4,
2019, pp. 1-5.
COMITÉ CONSULTATIF NATIONAL D ́ÉTHIQUE POUR LES SCIENCES DE LA VIE ET DE LA SANTÉ; DEUTSCHER ETHIKRAT; NUFFIELD COUNCIL ON BIOETHICS; Joint Statement on the Ethics of Heritable Human Genome Editing, 2020, pp. 1-3. (https://www.nuffieldbioethics.org/assets/pdfs/Joint-statement.pdf).
DE MIGUEL BERIAIN, I.; ROMEO CASABONA, C. M. (eds.); Synbio and human health a challenge to the current IP framework?, Dordrecht, Springer, 2014, 229 pp.
DE MIGUEL BERIAIN, I.; PENASA, S.; “The embryo survival criterion: a moral obligation or a eugenic practice?”, Romanian Journal of Legal Medicine, Vol. 26, No. 2, 2018, pp. 212-217.
DE MIGUEL BERIAIN, I.; “Human dignity and gene editing. Using human dignity as an argument against modifying the human genome and germline is a logical fallacy”, EMBO Reports, Vol. 19, No. 10, 2018, pp. 1-4.
DE MIGUEL BERIAIN, I.; “The Geneva Statement on Heritable Human Genome Editing: A Criticism”, Trends in Biotechnology, Vol. 39, No. 3, 2021, pp. 219-220.
DEUTSCHER ETHIKRAT; Intervening in the Human Germline: Opinion. Executive Summary & Recommendations, Berlin, Deutscher Ethikrat, 2019, 59 pp. (https://www.ethikrat.org/fileadmin/Publikationen/Stellungnahmen/englisch/opinion-intervening-in-the-human-germline- summary.pdf).
EMALDI CIRIÓN, A., “La maternidad subrogada vulnera el principio constitucional de la seguridad jurídica. La imperiosa necesidad de buscar una solución al problema español: cambio legislativo o cumplimiento de la ley”, Dilemata. Revista Internacional de Éticas Aplicadas, núm. 28, 2018, pp. 123-135.
EUROPEAN GROUP ON ETHICS AND NEW TECHNOLOGIES; EGE opinion on the Ethics of Genome Editing, Luxembourg, Publications Office of the European Union, 2021, 108 pp.
FRANGOUL, H.; ALTSHULER, D.; CAPPELLINI, M. D.; CHEN, Y.-S.; DOMM, J.; EUSTACE, B. K.; et. al.; “CRISPR-Cas9 Gene Editing for Sickle Cell Disease and β-Thalassemia”, The New England Journal of Medicine, 2020, pp. 1-9.
FUNDACIÓN BBVA; Estudio Europeo de Valores Fundación BBVA Tercera parte: Valores y actitudes en Europa hacia la ciencia, la tecnología y la naturaleza, 2020, pp. 1-76. (https://www.fbbva.es/noticias/los-ciudadanos-europeos-confian- en-la-ciencia-y-la-tecnologia-a-la-vez-que-apoyan-la-conservacion-de-la-naturaleza/).
GASKELL, G.; BARD, I.; ALLANSDOTTIR, A.; VIEIRA DA CUNHA, R.; EDUARD, P.; HAMPEL, J.; et. al.; “Public views on gene editing and its uses”, Nature Biotechnology, No. 35, 2017, pp. 1021-1023.
GETZ, L. J.; DELLAIRE, G.; “Back to basics: Application of the Principles of Bioethics to Heritable Genome Interventions”, Science and Engineering Ethics, Vol. 26, No. 5, 2020, pp. 2735-2748.
HABERMAS, J.; El futuro de la naturaleza humana. ¿Hacia una eugenesia liberal?, Barcelona, Paidós, 2018, 143 pp. HALPERN, J.; O ́HARA, S. E.; DOXZEN, K. W.; WITKOWSKY, L. B.; OWEN, A. L.; “Societal and Ethical Impacts of
Germline Genome Editing: How Can We Secure Human Rights?”, The CRISPR Journal, Vol. 2, No. 5, 2019, pp. 293-298. ISHII, T.; DE MIGUEL BERIAIN, I.; “Safety of Germline Genome Editing for Genetically Related Future Children as
Perceived by Parents”, The CRISPR Journal, Vol. 2, No. 6, 2019, pp. 370-375.
JEDWAB, A.; VEARS, D. F.; TSE, C.; GYNGELL, C.; “Genetics experience impacts attitudes towards germline gene
editing: a survey of over 1500 members of the public”, Journal of Human Genetics, Vol. 65, No. 12, 2020, pp. 1055-1065. JIMÉNEZ GONZÁLEZ, J.; “Selección de sexo en fase embrionaria: una visión desde la ciencia, la ética y el derecho”, Ius
et Scientia, núm. 2, vol. 3, 2017, pp. 63-87.
JINEK, M.; CHYLINSKI, K.; FONFARA, I.; HAUER, M.; DOUDNA, J. A.; CHARPENTIER, E.; “A Programmable
Dual-RNA-Guided DNA Endonuclease in Adaptive Bacterial Immunity”, Science, Vol. 337, 2012, pp. 816-821.
KHAN, S.; MAHMOOD, M. S.; RAHMAN, S. u.; ZAFAR, H.; HABIBULLAH, S.; KHAN, Z.; et. al.; “CRISPR/Cas9: the
Jedi against the dark empire of diseases”, Journal of Biomedical Science, Vol. 25, No. 29, 2018, pp. 1-18.
KLEIDERMAN, E.; RAVITSKY, V.; KNOPPERS, B. M.; “The ́serious ́ factor in germline modification”, Journal of
Medical Ethics, Vol. 45, 2019, pp. 508-513.
KOFLER, N.; KRASCHEL, K. L.; “Treatment of heritable diseases using CRISPR: Hopes, fears, and reality”, Seminars in
Perinatology, Vol. 42, No. 8, 2018, pp. 515-521.
LACADENA, J.-R.; “Genética y Humanismo. Edición genómica: ciencia y ética”, Revista Iberoamericana de Bioética,
núm. 3, 2017, pp. 1-14.
LANDER, E. S.; BAYLIS, F.; ZHANG, F.; CHARPENTIER, E.; BERG, P.; BOURGAIN, C.; et. al.; “Adopt a moratorium
on heritable genome editing”, Nature, Vol. 567, 2019, pp. 165-168.
LEMA AÑÓN, C.; “¿Mejores que quién? Intervenciones de mejora, derechos humanos y discriminación”, ROMEO CASABONA, C. M. (Ed.), Más allá de la salud. Intervenciones de mejora en humanos, Bilbao-Granada, Comares, 2012, pp. 27-81.
MARCHIONE, M.; “Chinese researcher claims first gene-edited babies”, Associated Press, 2018. (https://apnews.com/article/4997bb7aa36c45449b488e19ac83e86d).
MONTOLIU, L.; Editando genes: recorta, pega y colorea. Las maravillosas herramientas CRISPR, Pamplona, Next Door Publishers, 2019, 434 pp.
NATIONAL ACADEMY OF MEDICINE, NATIONAL ACADEMY OF SCIENCES, AND THE ROYAL SOCIETY; Heritable Human Genome Editing, Washington, D.C., The National Academies Press, 2020, 211 pp.
NUFFIELD COUNCIL ON BIOETHICS; Genome Editing and Human Reproduction: social and ethical issues, London, Nuffield Council on Bioethics, 2018, 183 pp. (https://www.nuffieldbioethics.org/wp-content/uploads/Genome-editing-and- human-reproduction-FINAL-website.pdf).
RANISCH, R.; “Germline genome editing versus preimplantation genetic diagnosis: Is there a case in favour of germline interventions?”, Bioethics, Vol. 34, No. 1, 2020, pp. 60-69.
ROMEO CASABONA,
de la Competencia, núm. 92, 2021, pp. 195-200.
Cuadernos Electrónicos de Filosofía del Derecho
https://ojs.uv.es/81dee54b-9770-47d4-b380-82b003666630" alt="page21image51825664" width="306.240000" height="0.480000" /> https://ojs.uv.es/04184354-7029-4578-a38e-c0b44a583c85" alt="page21image51822784" width="164.160000" height="0.480000" />
ROMEO CASABONA, 1997, pp. 105-135.
ROMEO CASABONA, 274 pp.
ROMEO CASABONA, 124.
ROMEO CASABONA,
ROMEO CASABONA, Comares, 2010, 220 pp.
C. M.; “El Derecho penal ante el racismo y la eugenesia”, Eguzkilore, núm. 11 (Extraordinario),
C. M.; Los genes y sus leyes. El derecho ante el genoma humano, Bilbao-Granada, Comares, 2002,
C. M.; “El estatuto jurídico del embrión humano”, Monografías Humanitas, núm. 4, 2004, pp. 111-
C. M.; Principio de precaución, Biotecnología y Derecho, Bilbao-Granada, Comares, 2004, 501 pp. C. M.; DE MIGUEL BERIAIN, I. (eds.); Ética de la BioTecnología. Una introducción, Granada,
C. M.; “¿Necesitamos una Bioconstitución?”, Comunicaciones en Propiedad Industrial y Derecho SÁNCHEZ VILANOVA, M.; “A propósito de la inalterabilidad e intangibilidad del patrimonio genético humano como bien
digno de protección penal”, Cuadernos Electrónicos de Filosofía del Derecho, núm. 41, 2019, pp. 136-154.
SANDEL, M.; Contra la perfección. La ética en la era de la ingeniería genética, 2.a Ed., Barcelona, Marbot, 2015, 187 pp.
SAVULESCU, J.; SINGER, P.; “An ethical pathway for gene editing”, Bioethics, 2019, pp. 221-222.
THE NATIONAL ACADEMIES OF SCIENCES, ENGINEERING AND MEDICINE; Human Genome Editing. Science, Ethics, and Governance, Washington, D.C., The National Academies Press, 2017, 310 pp.
WALTON, D.; “The Slippery Slope Argument in the Ethical Debate on Genetic Engineering of Humans”, Science and Engineering Ethics, Vol. 23, No. 6, 2017, pp. 1507-1528.
WELLS, D.; VERMEESCH, J. R.; SIMPSON, J.L.; “Current controversies in Prenatal Diagnosis 3: Gene editing should replace embryo selection following PGD”, Prenatal Diagnosis, Vol. 39, No. 5, 2019, pp. 344-350.
WHO EXPERT ADVISORY COMMITTEE ON DEVELOPING GLOBAL STANDARDS FOR GOVERNANCE AND OVERSIGHT OF HUMAN GENOME EDITING; CAVALIERE, G.; Background Paper. The Ethics of Human Genome Editing, Geneva, World Health Organization, 2019, 18 pp. (https://www.who.int/ethics/topics/human-genome- editing/WHO-Commissioned-Ethics-paper-March19.pdf).
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