RESUMEN
This paper critiques the restrictive criteria for germline genome editing recently proposed by Chin, Nguma, and Ahmad in this journal. While praising the authors for resisting fervent calls for an outright ban on clinical applications of the technology, this paper argues that their approach is nevertheless unduly restrictive, and may thus hinder technological progress. This response advocates for weighing potential benefits against risks without succumbing to excessive caution, proposing that ethical oversight combined with genetic scrutiny at the embryo stage post-editing can enable responsible use of the technology, ultimately reducing the burden of genetic diseases and enhancing human health, akin to how IVF transformed reproductive medicine despite strong initial opposition.
Asunto(s)
Fertilización In Vitro , Edición Génica , Células Germinativas , Humanos , Fertilización In Vitro/métodos , Edición Génica/ética , Edición Génica/métodos , Femenino , Embrión de MamíferosAsunto(s)
Anemia de Células Falciformes , Sistemas CRISPR-Cas , Edición Génica , Terapia Genética , Humanos , Anemia de Células Falciformes/genética , Anemia de Células Falciformes/terapia , Hemoglobina Fetal/biosíntesis , Hemoglobina Fetal/genética , Edición Génica/métodos , Edición Génica/ética , Enfermedades Genéticas Congénitas/genética , Enfermedades Genéticas Congénitas/terapia , Terapia Genética/economía , Terapia Genética/métodos , Fármacos Hematológicos/uso terapéuticoRESUMEN
In 2018, the Chinese scientist He Jiankui presented his research at the Second International Summit on Human Genome Editing in Hong Kong. While it was intended that he facilitate a workshop, he was instead called on to present his research in heritable human genome editing, where he made the announcement that he had taken great strides in advancement of his research, to the extent that he had gene-edited human embryos and that this had resulted in the live births of two children. While his research ethic and methodology was interrogated, he insisted that two children, twin girls, had been born healthy and that there was another pregnancy (at the time) where birth of a third gene edited child would be imminent. This announcement generated a ripple effect in the scientific community and exposed the gaps in regulation and absence of law relating to the technology. This resulted in a flurry of activity and conversation around regulation of the technology, which scientists stated was not ready for human trials. This article reviews the Third Summit which was held in London in March 2023 and comments on the latest developments in the regulation of heritable human genome editing.
Asunto(s)
Edición Génica , Genoma Humano , Humanos , Edición Génica/ética , Edición Génica/legislación & jurisprudencia , Hong Kong , Femenino , EmbarazoRESUMEN
Heritable human genome editing (HHGE) to correct a nuclear gene sequence that would result in a serious genetic condition in a future child is presented as 'treatment' in various ethics and policy materials, and as morally preferable to the 'selection' practice of preimplantation genetic testing (PGT), which is subject to the disability critique. However, whether HHGE is 'treatment' for a future child, or another form of 'selection', or whether HHGE instead 'treats' prospective parents, are now central questions in the debate regarding its possible legalisation. This article argues that the idea of 'treatment' for a future child is largely a proxy for 'seriousness of purpose', intended to distinguish HHGE to avoid serious genetic conditions from less obviously justifiable uses; that HHGE is best understood, and morally justified, as a form of 'treatment' for prospective parents who strongly desire an unaffected genetically related child and who have no, or poor, options to achieve this; that HHGE would be morally permissible if consistent with that child's welfare; that legalisation is supportable with reference to the right to respect for private and family life under Article 8 of the European Convention on Human Rights; and that HHGE is morally distinguishable from PGT.
Asunto(s)
Edición Génica , Diagnóstico Preimplantación , Humanos , Edición Génica/ética , Edición Génica/legislación & jurisprudencia , Diagnóstico Preimplantación/ética , Genoma Humano , Pruebas Genéticas/legislación & jurisprudencia , Pruebas Genéticas/ética , Terapia Genética/ética , Terapia Genética/legislación & jurisprudencia , Enfermedades Genéticas Congénitas/terapiaRESUMEN
This paper critically engages with how life not worth living (LNWL) and cognate concepts are used in the field of beginning-of-life bioethics as the basis of arguments for morally requiring the application of preimplantation genetic diagnosis (PGD) and/or germline genome editing (GGE). It is argued that an objective conceptualization of LNWL is largely too unreliable in beginning-of-life cases for deriving decisive normative reasons that would constitute a moral duty on the part of intending parents. Subjective frameworks are found to be more suitable to determine LNWL, but they are not accessible in beginning-of-life cases because there is no subject yet. Conceptual and sociopolitical problems are additionally pointed out regarding the common usage of clear case exemplars. The paper concludes that a moral requirement for the usage of PGD and GGE cannot be derived from the conceptual base of LNWL, as strong reasons that can be reliably determined are required to limit reproductive freedom on moral grounds. Educated predictions on prospective well-being might still be useful regarding the determination of moral permissibility of PGD and/or GGE. It is suggested that due to the high significance of subjective experience in the normativity of beginning-of-life bioethics, the discipline is called to more actively realize the inclusion of people with disabilities. This regards for instance research design, citation practices, and language choices to increase the accessibility of societal debates on the reproductive ethics of genetic technologies.
Asunto(s)
Edición Génica , Diagnóstico Preimplantación , Técnicas Reproductivas Asistidas , Humanos , Técnicas Reproductivas Asistidas/ética , Técnicas Reproductivas Asistidas/psicología , Diagnóstico Preimplantación/ética , Edición Génica/ética , Bioética , Valor de la Vida , Obligaciones Morales , Comienzo de la Vida Humana/ética , Principios Morales , Filosofía MédicaRESUMEN
This study investigates changes in the social valuation of the human genome over the more than 30 years since the establishment of the Human Genome Project. It offers a descriptive sociological analysis of the three waves of this valuation, mainly by considering three key UNESCO declarations and a relevant report. These waves represent a shifting balance between collectivism and individualism, starting with a broadly constructed valuation of the human genome as common human heritage and moving toward a valuation of dynamic applications within various social and medical contexts (e.g., personalized genomic medicine and genome editing). We seek to broaden the analytical perspective by examining how the declarations' ethical foci are framed within the context of rapidly evolving genetic technologies and their social applications. We conclude by discussing continuity and change in value balancing vis-à-vis changing genomic technologies.
Asunto(s)
Genoma Humano , Humanos , Proyecto Genoma Humano/ética , Genómica/ética , Genómica/métodos , Técnicas Genéticas/ética , Técnicas Genéticas/economía , Edición Génica/éticaRESUMEN
Mexico has the in-house technical and regulatory capacity to undertake human genome editing (HGE) governance. However, its regulatory framework must be reformed to be more targeted and govern the application of any emerging HGE technologies, leaving no room for unethical or unsafe practices for reproductive purposes.
Asunto(s)
Edición Génica , Genoma Humano , Humanos , México , Edición Génica/legislación & jurisprudencia , Edición Génica/ética , Edición Génica/métodos , Genoma Humano/genéticaAsunto(s)
Sistemas CRISPR-Cas , Edición Génica , Humanos , Edición Génica/ética , Sudáfrica , Genoma Humano , Factores SocioeconómicosRESUMEN
London meeting touts sickle cell success, but questions about embryo editing linger.
Asunto(s)
Anemia de Células Falciformes , Bioética , Investigaciones con Embriones , Edición Génica , Embrión de Mamíferos , Edición Génica/ética , Edición Génica/métodos , Londres , Anemia de Células Falciformes/genética , Anemia de Células Falciformes/terapia , Congresos como Asunto , Humanos , Femenino , Adulto , Investigaciones con Embriones/éticaRESUMEN
Revised regulations follow controversy over work that created genetically edited babies.
Asunto(s)
Edición Génica , Experimentación Humana , Humanos , China , Experimentación Humana/ética , Edición Génica/ética , Recién NacidoAsunto(s)
Sistemas CRISPR-Cas , Repeticiones Palindrómicas Cortas Agrupadas y Regularmente Espaciadas , Embrión de Mamíferos , Edición Génica , Humanos , Recién Nacido , Repeticiones Palindrómicas Cortas Agrupadas y Regularmente Espaciadas/genética , Sistemas CRISPR-Cas/genética , Embrión de Mamíferos/metabolismo , Edición Génica/ética , Mutación de Línea Germinal , Medición de RiesgoRESUMEN
Understanding moral acceptability and willingness to use is crucial for informing policy.
Asunto(s)
Embrión de Mamíferos , Edición Génica , Pruebas Genéticas , Herencia Multifactorial , Pruebas Genéticas/ética , Riesgo , Humanos , Edición Génica/ética , Formulación de Políticas , Estados UnidosRESUMEN
The present work has the objective of analyzing whether the practice of gene editing, from the teleological foundation, can generate a scenario of neoeugenic choices. This study analyzes the current stage of gene editing, together with the panorama of neoeugenic practices, to delimit the distinctive aspects between these concepts, based on the desired purpose in the practice of gene editing. For that, the analytical-discursive method was used, identifying fundamental connections related to the problem and interpreting the concepts presented in search of an adequate response to the objectives raised. The research was based on scientific articles published in specialized journals, as well as books and chapters in collective works. (AU)
El presente trabajo tiene como objetivo analizar si la práctica de la edición genética, desde el fundamento teleológico, puede generar un escenario de elecciones neoeugenésicas. Este estudio analiza la etapa actual de la edición de genes, junto con el panorama de las prácticas neoeugenésicas, con el fin de delimitar los aspectos distintivos entre estos conceptos, en función de la finalidad deseada en la práctica de la edición de genes. Para ello se utilizó el método analítico-discursivo, identificando conexiones fundamentales relacionadas con el problema e interpretando los conceptos presentados en busca de una respuesta adecuada a los objetivos planteados. La investigación se basó en artículos científicos publicados en revistasespecializadas, así como en libros y capítulos de obras colectivas. (AU)
Asunto(s)
Humanos , Edición Génica/ética , Edición Génica/legislación & jurisprudencia , Edición Génica/tendencias , Discusiones Bioéticas/legislación & jurisprudencia , Genoma Humano/genética , Biotecnología/legislación & jurisprudenciaAsunto(s)
Edición Génica , Células Germinativas , Edición Génica/ética , Terapia Genética/ética , HumanosAsunto(s)
Comunicación , Liderazgo , National Institutes of Health (U.S.)/organización & administración , National Institutes of Health (U.S.)/tendencias , Política , Ciencia , Investigación Conductal , Investigación Biomédica/organización & administración , Investigación Biomédica/tendencias , COVID-19/diagnóstico , COVID-19/prevención & control , Gobierno Federal , Investigación Fetal/legislación & jurisprudencia , Mutación con Ganancia de Función , Edición Génica/ética , Edición Génica/legislación & jurisprudencia , Humanos , National Institutes of Health (U.S.)/legislación & jurisprudencia , Asunción de Riesgos , Ciencia/tendencias , Estados UnidosAsunto(s)
Eugenesia/métodos , Edición Génica/ética , Reproducción/genética , Justicia Social/ética , Poblaciones Vulnerables , Aborto Inducido/ética , Sistemas CRISPR-Cas/genética , Eugenesia/historia , Femenino , Historia del Siglo XX , Historia del Siglo XXI , Humanos , Participación del Paciente , Esterilización Involuntaria/ética , Esterilización Involuntaria/historia , Confianza , Estados UnidosRESUMEN
Gary Humphreys talks to Kazuto Kato about the ethical and societal challenges posed by biotechnologies that allow for the editing of the human genome.