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Videos from the talks presented at the XII World Conference on Bioethics devoted to CRISPR gene editing. Bioethical and Legal Aspects, 13-15 May 2024
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FDA Guidance for Industry: Foods Derived from Plants Produced Using Genome Editing, February 2024
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EMA Approval of Casgevy, 9 February 2024
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New Genomic Techniques: MEPs back rules to support green transition of farmers, 7 February 2024
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FDA Human Gene Therapy Products Incorporating Human Genome Editing, January 2024
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FDA Approval of Casgevy, 8 December 2023
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UK Approval of Casgevy: MHRA authorises world-first gene therapy that aims to cure sickle-cell disease and transfusion-dependent β-thalassemia, 16 November 2023
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EC Proposal for a new Regulation on plants produced by certain new genomic techniques, 5 July 2023
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UK Genetic Technology (Precision Breeding) Act 2023, 27 March 2023
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Nuffield Council on Bioethics response the Genetic Technology (Precision Breeding) Bill. Nuffield Council on Bioethics. 25 May 2022
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Genome editing and farmed animal breeding: social and ethical issues, Nuffield Council on Bioethics. 1 December 2021
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Human genome editing: recommendations, WHO. 12 July 2021
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Human genome editing: a framework for governance, WHO. 12 July 2021
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Human genome editing: position paper, WHO. 12 July 2021
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EC study on new genomic techniques, European Commission. 29 April 2021
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European Group on Ethics in Science and New Technologies opinion on the Ethics of Genome Editing, EGE. 20 April 2021
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Executive summary of the opinion Ethics of Genome Editing, EGE. 20 April 2021
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Heritable Human Genome Editing (National Academy of Medicine; National Academy of Sciences; The Royal Society; International Commission on the Clinical Use of Human Germline Genome Editing), September 2020
- Procreative Non-Maleficence: A South African Human Rights Perspective on Heritable Human Genome Editing. Donrich Thaldar and Bonginkosi Shozi, The CRISPR Journal, Vol. 3, No. 1, February 2020
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A molecular scalpel for intervention in the genome: Opportunities and risks associated with genome editing (TA-SWISS, Foundation for Technology Assessment), 2019
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COMMON STATEMENT between the Association of Responsible Research and Innovation in Genome Editing (ARRIGE), the Genome Writers Guild (GWG) and the Japanese Society for Genome Editing (JSGE) on the use of genome editing techniques in human embryos leading to live births 14 June 2019
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Statement from ARRIGE Steering Committee on the possible first gene-edited babies, 3 December 2018
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Editing nature: Local roots of global governance. Natalie Kofler, James P. Collins, Jennifer Kuzma, Emma Marris, Kevin Esvelt, Michael Paul Nelson, Andrew Newhouse, Lynn J. Rothschild, Vivian S. Vigliotti, Misha Semenov, Rowan Jacobsen, James E. Dahlman, Shannon Prince, Adalgisa Caccone, Timothy Brown, Oswald J. Schmitz. Science 02 Nov 2018: Vol. 362, Issue 6414, pp. 527-529. DOI: 10.1126/science.aat4612.
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Genome Editing and Human Reproduction: social and ethical issues. Report by the Nuffield Council on Bioethics, July 2018.
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Precaution in the environmental field. Ethical requirements for the regulation of new biotechnologies. Report of the Federal Ethics Committee on Non-Human Biotechnology (ECNH). Swiss Confederation, May 2018.
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Review of the National Gene Technology Scheme – Consultation approach 2017. Australian Government. Department of Health. Update 28 March 2018.
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Interested in responsible gene editing? Join the (new) club. Martin Enserink. Science, 27 March 2018.
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A global observatory for gene editing. Sheila Jasanoff and J. Benjamin Hurlbut. Nature, 21 March 2018.
- Genomics and genetic medicine: pathways to global health? Sahra Gibbon, Susie Kilshaw & Margaret Sleeboom-Faulkner. Journal of Anthropology & Medicine (2018) 5(1): 1-10, online 13 March 2018.
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Could Failure in Preimplantation Genetic Diagnosis Justify Editing the Human Embryo Genome? Steffann J, Jouannet P, Bonnefont JP, Chneiweiss H, Frydman N. Cell Stem Cell. 2018 Feb 2. pii: S1934-5909(18)30004-3.
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Mind the gaps! Towards an ethical framework for genome editing. Matthias Braun and Peter Dabrock. EMBO Reports, Volume 19, Issue 2, February 2018.
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Responsible innovation in human germline gene editing: Background document to the recommendations of ESHG and ESHRE. De Wert G, Heindryckx B, Pennings G, Clarke A, Eichenlaub-Ritter U, van El CG, Forzano F, Goddijn M, Howard HC, Radojkovic D, Rial-Sebbag E, Dondorp W, Tarlatzis BC, Cornel MC; European Society of Human Genetics and the European Society of Human Reproduction and Embryology. Eur J Hum Genet. (2018) Jan 12.
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Human germline gene editing: Recommendations of ESHG and ESHRE. de Wert G, Pennings G, Clarke A, Eichenlaub-Ritter U, van El CG, Forzano F, Goddijn M, Heindryckx B, Howard HC, Radojkovic D, Rial-Sebbag E, Tarlatzis BC, Cornel MC; European Society of Human Genetics and the European Society of Human Reproduction and Embryology. Eur J Hum Genet. (2018) Jan 12.
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CRISPR-Cas9, cellules germinales et embryon humain. Pierre Jouannet, Biologie Aujourd’hui (2017) 211(3): 207-213.
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Human embryo genome editing and child health. Pierre Jouannet, Bioethica Forum (2017) 10(1):24-25.
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CRISPR-Cas9: l’interdiction de la thérapie génique germinale est-elle devenue inappropriée? Bernard Baertschi, Bioethica Forum (2017) 10(2):41-49.
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Public Dialogue Reports on Genetic Technologies (including genome-editing in humans, animals and plants). The Royal Society, UK. December 2017.
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Basic Understanding of Genome Editing, 2017, Progress Educational Trust (PET) and Genetic Alliance UK.
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Gene Editing in Humans: Towards a Global and Inclusive Debate for Responsible Research. de Lecuona I, Casado M, Marfany G, Lopez Baroni M, Escarrabill M. Yale J Biol Med. 2017 Dec 19;90(4):673-681.
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Genome editing, metaphors and language choices. Brigitte Nerlich. University of Nottingham, UK. November 2017.
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EASAC report on Genome Editing: Scientific opportunities, public interests, and policy options in the EU (2017) European Academies Sciece Advisory Council (EASAC).
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Human Genome Editing: Science, Ethics, and Governance (2017), The National Academy of Sciences.
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ASHG Position Statement on Human Germline Genome Editing (2017) American Society for Human Genetics.
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Genomforschung/Genomeditierung (2017) Deutscher Ethikrat.
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Ethical and legal assessment of genome editing in research on human cells (2017) Leopoldina (Germany).
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The application of Genome Editing in humans (2017) Postition Paper by the Federation of European Academies of Medicine.
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One small edit for humans, one giant edit for humankind? Points and questions to consider for a responsible way forward for gene editing in humans (2017) Report by the Public and Professional Policy Committee of the European Society of Human Genetics
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Report on the use of new genetic technologies in human beings of the Parliamentary Assembly of the Council of Europe (PACE, rapporteur Petra de Sutter, Belgium) (2017) Council of Europe.
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PACE Recommendation 2115(2017) on the use of new genetic technologies in human beings, based on the report from Petra de Sutter (2017) Council of Europe.
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Editing Human DNA. Moral and social implications of germline genetic modification (CGM/170328-01) The Netherland Commission on Genetic Modification (COGEM). 21 September 2017.
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Ethical issues of CRISPR technology and gene editing through the lens of solidarity. Mulvihill JJ, Capps B, Joly Y, Lysaght T, Zwart HAE, Chadwick R; International Human Genome Organisation (HUGO) Committee of Ethics, Law, and Society (CELS). Br Med Bull. 2017 Jun 1;122(1):17-29.
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India Genetic Testing and Research, ICMR National Ethical Guidelines (2017)
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Human gene editing: revisiting Canadian policy (2017) npj Regenerative Medicine 2;3. Editorial doi:10.1038/s41536-017-0007-2.
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Engaging Māori in biobanking and genomic research: a model for biobanks to guide culturally informed governance, operational, and community engagement activities. Beaton A, Hudson M, Milne M, Port RV, Russell K, Smith B, Toki V, Uerata L, Wilcox P, Bartholomew K, Wihongi H. Genet Med. (2017) Mar;19(3):345-351.
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The application of Genome Editing in humans. The Federation of European Academies of Medicine (FEAM) . October (2017).
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Human Genome Editing in the EU. The Federation of European Academies of Medicine (FEAM). 10 Mar (2017).
- Statement from the Danish Council on Ethics on genetic modification of future humans In response to advances in the CRISPR technology (2016) The Danish Council on Ethics
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Genetic editing of human germline cells and embryos. Académie Nationale de Médecine. April (2016).
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Genome Editing. An ethical review (2016) Nuffield Council on Bioethics.
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Document on bioethics and gene editing in humans (2016) J. Santaló, M. Casado (coord.) Observatori de Bioètica i Dret, Universitat de Barcelona.
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Open Letter on Reproductive Human Germline Modification (2015) Center for Genetics and Society, November 2015.
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Report of the International Bioethics Committee on Updating Its Reflection on the Human Genome and Human Rights (2015) IBC-UNESCO.
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EGE Statement on Gene Editing (2015) European Group of Ethics in Science and New Technologies (EGE).
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Human Genome Surgery. Towards a Responsible Evaluation of A New Technology (2015) Berlin-Brandenburg Academy of Sciences and Humanities, Interdisciplinary Research Group Gene Technology Report.
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Statement on Genome Editing Technologies and Human Germline Genetic Modification (2015) The Hinxton Group.
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Statement by the intergovernmental Committee on Bioethics (DH-BIO) on gene editing technologies (2015) Council of Europe.
ARRIGE STATEMENTS
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Ethics of CRISPR Gene Therapy
April 2024
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Statement about European Parliament Vote on New Genomic Techniques Regulation in Plants
February 2024
Statement about EC Proposal on New Genomic Techniques Regulation in Plants
July 2023
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Statement on the regulation of gene editing for crop breeding
April 2021
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Gene Drive technology: state of the question on science and ethics
October 2020
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Statement from Steering Committee on the possible first gene-edited babies
December 2018