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      Ethical issues related to gen editing using CRISPR-Cas9 technology Translated title: Qüestions ètiques de l'edició genètica mitjançant la tecnología CRISPR-Cas9 Translated title: Cuestiones éticas de la edición genética mediante la tecnología CRISPR-Cas9

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          Abstract

          Abstract Immersed already in the 4th industrial revolution, clearly the digital age has invaded our lives. People tend to celebrate every technological and scientific advance without thinking properly about the possible undesired side effects or unexpected consequences. One of the most outstanding achievements of the last years has been the CRISPR/Cas9 technique. It seems to be the magic wand to solve whatever. In this article I propose to think critically about the ethical issues related to this incredible technique. I will focus this work on 3 ethical aspects of gene editing: 1. The link between gene editing and the old concept of eugenics; 2. Aspects related to the idea of modifying human genetics in order to conquer other planets and 3. The ethical implications of uploading all these data to the web. Finally, I suggest focusing on interdisciplinary ethical discussion, the dialogue between professionals, institutions and government which must ensure the protection of the autonomy of patients and the safeguarding of their rights. To conclude, the suggestion of considering the role of Universities in ethical education of the future professionals with a practical rather than a theoretical approach is considered, with special attention to the integration of cybernetics in medicine.

          Translated abstract

          Resum Immersos ja en la 4a revolució industrial, clarament l'era digital ha envaït les nostres vides. La gent tendeix a celebrar cada avanç tecnològic i científic sense pensar adequadament en els possibles efectes secundaris no desitjats o les conseqüències inesperades. Un dels assoliments més destacats dels últims anys ha estat la tècnica CRISPR/*Cas9. Sembla ser la vareta màgica per a resoldre el que sigui. En aquest article em proposo pensar críticament sobre les qüestions ètiques relacionades amb aquesta increïble tècnica. Centraré aquest treball en 3 aspectes ètics de l'edició de gens: 1. El vincle entre l'edició de gens i l'antic concepte d'eugenèsia; 2. Aspectes relacionats amb la idea de modificar la genètica humana per a conquistar altres planetes i 3. Les implicancias ètiques de pujar totes aquestes dades a la web. Finalment, suggereixo enfocar-se en la discussió ètica interdisciplinària, el diàleg entre professionals, institucions i govern que ha d'assegurar la protecció de l'autonomia dels pacients i la salvaguarda dels seus drets. Per a concloure, es planteja el suggeriment de considerar el paper de les Universitats en l'educació ètica dels futurs professionals amb un enfocament més pràctic que teòric, amb especial atenció a la integració de la cibernètica en la medicina.

          Translated abstract

          Resumen Inmersos ya en la 4ª revolución industrial, claramente la era digital ha invadido nuestras vidas. La gente tiende a celebrar cada avance tecnológico y científico sin pensar adecuadamente en los posibles efectos secundarios no deseados o las consecuencias inesperadas. Uno de los logros más destacados de los últimos años ha sido la técnica CRISPR/Cas9. Parece ser la varita mágica para resolver lo que sea. En este artículo me propongo pensar críticamente sobre las cuestiones éticas relacionadas con esta increíble técnica. Centraré este trabajo en 3 aspectos éticos de la edición de genes: 1. El vínculo entre la edición de genes y el antiguo concepto de eugenesia; 2. Aspectos relacionados con la idea de modificar la genética humana para conquistar otros planetas y 3. Las implicancias éticas de subir todos estos datos a la web. Finalmente, sugiero enfocarse en la discusión ética interdisciplinaria, el diálogo entre profesionales, instituciones y gobierno que debe asegurar la protección de la autonomía de los pacientes y la salvaguarda de sus derechos. Para concluir, se plantea la sugerencia de considerar el papel de las Universidades en la educación ética de los futuros profesionales con un enfoque más práctico que teórico, con especial atención a la integración de la cibernética en la medicina.

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          Most cited references22

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          A programmable dual-RNA-guided DNA endonuclease in adaptive bacterial immunity.

          Clustered regularly interspaced short palindromic repeats (CRISPR)/CRISPR-associated (Cas) systems provide bacteria and archaea with adaptive immunity against viruses and plasmids by using CRISPR RNAs (crRNAs) to guide the silencing of invading nucleic acids. We show here that in a subset of these systems, the mature crRNA that is base-paired to trans-activating crRNA (tracrRNA) forms a two-RNA structure that directs the CRISPR-associated protein Cas9 to introduce double-stranded (ds) breaks in target DNA. At sites complementary to the crRNA-guide sequence, the Cas9 HNH nuclease domain cleaves the complementary strand, whereas the Cas9 RuvC-like domain cleaves the noncomplementary strand. The dual-tracrRNA:crRNA, when engineered as a single RNA chimera, also directs sequence-specific Cas9 dsDNA cleavage. Our study reveals a family of endonucleases that use dual-RNAs for site-specific DNA cleavage and highlights the potential to exploit the system for RNA-programmable genome editing.
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            Finishing the euchromatic sequence of the human genome.

            The sequence of the human genome encodes the genetic instructions for human physiology, as well as rich information about human evolution. In 2001, the International Human Genome Sequencing Consortium reported a draft sequence of the euchromatic portion of the human genome. Since then, the international collaboration has worked to convert this draft into a genome sequence with high accuracy and nearly complete coverage. Here, we report the result of this finishing process. The current genome sequence (Build 35) contains 2.85 billion nucleotides interrupted by only 341 gaps. It covers approximately 99% of the euchromatic genome and is accurate to an error rate of approximately 1 event per 100,000 bases. Many of the remaining euchromatic gaps are associated with segmental duplications and will require focused work with new methods. The near-complete sequence, the first for a vertebrate, greatly improves the precision of biological analyses of the human genome including studies of gene number, birth and death. Notably, the human genome seems to encode only 20,000-25,000 protein-coding genes. The genome sequence reported here should serve as a firm foundation for biomedical research in the decades ahead.
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              Is Open Access

              How should we think about clinical data ownership?

              The concept of ‘ownership’ is increasingly central to debates, in the media, health policy and bioethics, about the appropriate management of clinical data. I argue that the language of ownership acts as a metaphor and reflects multiple concerns about current data use and the disenfranchisement of citizens and collectives in the existing data ecosystem. But exactly which core interests and concerns ownership claims allude to remains opaque. Too often, we jump straight from ‘ownership’ to ‘private property’ and conclude ‘the data belongs to the patient’. I will argue here that private property is only one type of relevant relationship between people, communities and data. There are several reasons to doubt that conceptualising data as private property presents a compelling response to concerns about clinical data ownership. In particular I argue that clinical data are co-constructed, so a property account would fail to confer exclusive rights to the patient. A non-property account of ownership acknowledges that the data are ‘about the patient’, and therefore the patient has relevant interests, without jumping to the conclusion that the data ‘belongs to the patient’. On this broader account of ownership, the relevant harm is the severing of the connection between the patient and their data, and the solution is to re-engage and re-connect patients to the data research enterprise.
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                Author and article information

                Journal
                bioetica
                Revista de Bioética y Derecho
                Rev. Bioética y Derecho
                Observatori de Bioètica i Dret - Cátedra UNESCO de Bioética (Barcelona, Barcelona, Spain )
                1886-5887
                2021
                : 53
                : 203-214
                Affiliations
                [1] orgnameUniversidad de Buenos Aires Argentina
                Article
                S1886-58872021000300203 S1886-5887(21)00005300203
                10.1344/rbd2021.53.33505
                cc12a4bf-a5ee-40b5-aaf6-9c225b2721ef

                This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

                History
                : 17 January 2021
                : 14 April 2021
                Page count
                Figures: 0, Tables: 0, Equations: 0, References: 22, Pages: 12
                Product

                SciELO Spain


                Gene Editing,Human enhancement,Big data,Mars mission,Bioethics, Eugenics,CRISPR/Cas9,Edición genética,Mejora Humana,Big Data,Misión a Marte,Eugenesia,Bioética,Edició genètica,Millora Humana,Missió a Mart,Eugenèsia,CRISPR/Cas9, Bioètica

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