Document Type : Article

Authors

1 Ph.D. Student in International Law, Faculty of Law and Political Science, Allameh Tabataba'i ‎University, Tehran, Iran‎

2 Prof., Department of Public International Law, Faculty of Law and Political Science, Allameh ‎Tabataba'i University, Tehran, Iran‎

Abstract

Technology in the field of genome editing or human germline engineering and is rapidly developing and will have a crucial role in disease diagnosis and treatments. Nevertheless, using germline-editing methods to modify the human genome raises serious medical, moral, and legal concerns. Modification of germline in humans and passing the edited genes to future generations might lead to unpredictable consequences. Moreover, human germline therapies raise challenges with regard to human rights obligations. The clinical uncertainties about the possible outcomes of the human germline modification on future generations and possible violation of their rights has led to calls for its absolute prohibition. Nevertheless, genome editing is permitted under the rules of international law insofar as it complies with human rights obligations.

Keywords

Main Subjects

  1.  English

    1. A) Books
    2. Abtahi, H., & Web, P. (2009). The Genocide Convention: The Travaux Préparatoires. Brill Nijhoff.
    3. Asher, J. (2004). The Right to Health: A Resource Manual for NGOs. Brill Nijhoff.
    4. Braun, M., Schickl, H., & Dabrock, P. (2018). Between Moral Hazard and Legal Uncertainty: Ethical, Legal and Societal Challenges of Human Genome Editing. Springer.
    5. Commentary of the Charter of Fundamental Rights of the European Union, 2006.
    6. Joseph, S., & Castan, M. (2013). The International Covenant on Civil and Political Rights: Cases, Materials, and Commentary. Oxford University Press.
    7. Klamberg, M. (2017). Commentary on the Law of the International Criminal Court. Torkel Opsahl Academic EPublisher.
    8. Mossialos, E., Permanand, G., & Baeten, R. (2010). Health Systems Governance in Europe: The Role of European Union Law and Policy.Cambridge University Press.
    9. Mowbray, A. (2012). Cases, Materials, and Commentary on the European Convention on Human Rights. Oxford University Press.
    10. Reece, B., Urry, J. L., Cain, M. L., Wasserman, S. A., Minorsky, P. V., & Jackson, R. B. (2009). Campbell Biology (9th ed.).
    11. Triffterer, O., & Ambos, K. (eds) (2016). The Rome Statute of the International Criminal Court: A Commentary. C.H. Beck, Hart.
    12. Viljoen, F., Odinkalu, C., & Anselm. (2006). The Prohibition of Torture and Ill-Treatment in the African Human Rights System: A Handbook for Victims and Their Advocates. World Organisation against Torture.

     

    1. B) Articles
    2. Barrangou, R., Fremaux, C., Deveau, H., & Richards, M. (2007). CRISPR Provides Acquired Resistance against Viruses in Prokaryotes. American Association for the Advancement of Science, 315(5819), 1709-1712.
    3. Cavaliere, Giulia (2018). Genome Editing And Assisted Reproduction: Curing Embryos, Society Or Prospective Parents?. Medicine, Health Care, and Philosophy, 21(2), 215-225.
    4. Cyranoski, D., & Reardon, S. (2020). “Chinese scientists genetically modify human embryos”, Nature News, DOI:10.1038/nature.2015.17378; available at: https://www.nature.com/news/chinese-scientists-genetically-modify-human-embryos-1.17378 (accessed 26 March 2020).
    5. Doudna, J. A., Charpentier, E. (2014). The New Frontier Of Genome Engineering With CRISPR-Cas9. Science, 346(6213). available at: https://science.sciencemag.org/content/346/6213/1258096
    6. Hongyi Li, Yang Yang, Weiqi Hong, Mengyuan Huang, Min Wu (2020). Applications Of Genome Editing Technology In The Targeted Therapy Of Human Diseases: Mechanisms, Advances And Prospects. Signal Transduction and Targeted Therapy, 5(1), 2020. DOI: 10.1038/s41392-019-0089-y (Accessed 22 March 2020)
    7. Joung, J., Keith, D., & Sander, J. (2013). Talens: A Widely Applicable Technology for Targeted Genome Editing. Nature Reviews Molecular Cell Biology, 14(1), 43-55.
    8. Liang, P., Xu, Y., & Zhang, X.(2015). CRISPR/Cas9-Mediated Gene Editing In Human Tripronuclear Zygotes. Protein Cell, 6(5), 363-372.
    9. MacIntosh, K. (2006). Human Clones and International Human Rights. Santa Clara Journal of International Law, 4(2), 134-156.
    10. Qi, Lei, H. Larson, Matthew, A. Gilbert, Luke and A. Doudna, Jennifer (2013). “Repurposing CRISPR as an RNA-Guided Platform for Sequence Specific Control of Gene Expression”, Cell, Volume 152, Issue 5, pages 1173-1183.
    11. Stevens, S. (2019). “Genome Engineering for Xenotransplantation”, IntechOpen, DOI: 10.5772/intechopen.84782, available at: https://www.intechopen.com/online-first/genome-engineering-for-xenotransplantation (Accessed 18 March 2020).
    12. Sykora, P., & Caplan, A. (2017). The Council of Europe Should Not Reaffirm the Ban on Germline Genome Editing in Humans. Embo Reports, 18(11), 1871-1872.

     

    1. C) International Instruments

    African Charter on Human and People’s Rights, 1987.

    1. American Convention on Human Rights, 1969.
    2. Charter of Fundamental Rights of the European Union, 2000.
    3. Charter of the United Nations, 1945.
    4. Commission Decision of 2 September 2003 relating to national provisions on banning the use of genetically modified organisms in the region of Upper Austria notified by the Republic of Austria pursuant to Article 95(5) of the EC Treaty, 2003/653/EC, Official Journal L 230, 16/09/2003 P. 0034 –0043, EUR-Lex-32003D0653 – EN.
    5. Constitution of the World Health Organization, 22 July 1946.
    6. Constitution of UNESCO, 1946.
    7. Convention against Torture and Other Cruel, Inhuman or Degrading Treatment and Punishment, 1948.
    8. Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Status as of 26/03/2020.
    9. Convention on the Elimination of All Forms of Discrimination against Women, 1981.
    10. Convention on the Elimination of All Forms of Racial Discrimination, 1969.
    11. Convention on the Prevention and Punishment of the Crime of Genocide, 1948.
    12. Convention on the Rights of Persons with Disabilities, 2006.
    13. Convention on the Rights of the Child, 1990.
    14. Declaration of Alma-Ata International Conference on Primary Health Care, 12 September 1978.
    15. Directive 98/44/EC of the European Parliament and of the Council of 6 July 1998 on the legal protection of biotechnological inventions, Document 31998L0044, EUR-Lex-31998L0044 – EN.
    16. International Covenant on Civil and Political Rights, 1976.
    17. International Covenant on Economic, Social and Cultural Rights, 1976.
    18. Oviedo Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, ETS No.164, 4 April 1997.
    19. Rome Statute, 1998.
    20. General Assembly, Declaration on the Use of Scientific and Technological Progress in the Interests of Peace and for the Benefit of Mankind, A/RES/3384(XXX), adopted by the 30th session, UN Doc. A/10034, 1976.
    21. UNESCO, Declaration on Science and the Use of Scientific Knowledge, 1999.
    22. UNESCO, Universal Declaration on Bioethics and Human Rights, 2005.
    23. UNESCO, Universal Declaration on the Human Genome and Human Rights, 1997.
    24. Universal Declaration of Human Rights, 1948.
    25. World Health Organization, World Health Assembly, Resolution WHA57.13 on Genomics and World Health, 22 May 2004

     

    1. D) Case Law
    2. Court of Justice of the European Union, Kingdom of the Netherlands v. European Parliament and Council of the European Union, Case C-377/98, Judgment of the Court of 9 October 2001.
    3. Inter-American Court of Human Rights, Case of the Yean and Bosico Children v. The Dominican Republic, Judgment of 8 September 2005.
    4. Inter-American Court on Human Rights, Case of Artavia Murillo et al. (“In Vitro Fertilization”) v. Costa Rica, Judgment of November 28, 2012.
    5. International Criminal Tribunal for the former Yugoslavia (ICTY), Prosecutor v. Krstic, Case No. IT-98-33-A (Appeals Chamber), April 19, 2004.
    6. European Court of Human Rights, VO v. France, Application No. 53924/00, 8 July 2004.
    7. Peter Michael Queenan v. Canada, Communication No. 1379/2005, U.N. Doc. CCPR/C/84/D/1379/2005.
    8. Vo v. France, Judgment, Merits, Application No 53924/00; available at: https://opil.ouplaw.com/view/10.1093/law:ihrl/3269echr04.case.1/law-ihrl-3269echr04 (Accessed 29 March 2020)
    9. Federal Constitutional Court of Germany, Abortion Decision, BVerfGE 39-1, Judgment of 25 February 1975.
    10. Federal Constitutional Court of Germany, Abortion Decision, BVerfGE 88- 203, Judgment of 28 May 1993.

     

    1. E) Reports
    2. Interdisciplinary Research Group Gene Technology Report, “Human Genome Surgery-Towards a Responsible Evaluation of a New Technology: Analysis” Berlin-Brandenburg Academy of Sciences and Humanities.
    3. Commission on Human Rights, Drafting Committee on An International Bill of Human Rights, First Session, Report of the Drafting Committee to the Commission on Human Rights, UN Doc. E/CN.4/21, 1 July 1947.
    4. Commission on Human Rights, Report of the Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health, E/CN.4/2004/49, 16 February 2004.
    5. Committee on Economic, Social and Cultural Rights, CESCR General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12), UN Doc. E/C.12/2000/4, 11 August 2000.
    6. Danish Council on Ethics, Statement from the Danish Council on Ethics on genetic modification of future humans: in response to advances in the CRISPR technology, 2016.
    7. EU Network of Independent Experts on Fundamental Rights, Commentary of the Charter of Fundamental Rights of the European Union, 2006.
    8. European Academies’ Science Advisory Council, Genome editing: scientific opportunities, public interests and policy options in the European Union, Policy Report 31, German National Academy of Sciences Leopoldina, 2017.
    9. German Academies of Sciences and Humanities, and the German Research Foundation, The opportunities and limits of genome editing, 2015.
    10. German Ethics Council, Germline intervention in the human embryo: German Ethics Council calls for global political debate and international regulation, 2017.
    11. International Law Commission, Fourth Report on Crimes against Humanity, UN Doc. A/CN.4/725, 18 February 2019.
    12. National Academies of Sciences, Engineering, and Medicine, Human Genome Editing: Science, Ethics, and Governance, The National Academies Press, 2017.
    13. Nuffield Council on Bioethics, Genome Editing: An Ethical Review, Jahrbuch für Wissenschaft und Ethik, September 2016.
    14. Royal Netherlands Academy of Arts and Sciences, Position Paper of the Royal Netherlands Academy of Arts and Sciences on Genome Editing, 2016.
    15. Shukla-Jones, A., S. Friedrichs and D. Winickoff, “Gene editing in an international context: Scientific, economic and social issues across sectors”, OECD Science, Technology and Industry Working Papers, No. 2018/04, OECD Publishing, 2018.
    16. UN Committee on Economic, Social and Cultural Rights (CESCR), General Comment No. 17: The Right of Everyone to Benefit from the Protection of the Moral and Material Interests Resulting from any Scientific, Literary or Artistic Production of Which He or She is the Author (Article 15, Paragraph 1(c) of the Covenant), UN Doc. E/C.12/GC/17, 12 January 2006.
    17. UN Economic and Social Council, Committee on Economic, Social and Cultural Rights, General comment No. 22 on the right to sexual and reproductive health (Article 12 of the International Covenant on Economic, Social and Cultural Rights), UN Doc. E/C.12/GC/22, 2 May 2016.
    18. UN Economic and Social Council, Report of the Working Group on a Draft Convention on the Rights of the Child, UN Doc. E/CN.4/1989/48, 2 March 1989.
    19. UN Human Rights Committee, General Comment No. 6: Article 6 on Right to Life, Adopted at the Sixteenth Session of the Human Rights Committee, on 30 April 1982.
    20. UNESCO, International Bioethics Committee (IBC), Report of the IBC on Updating its Reflection on the Human Genome and Human Rights, 2015.
    21. UNESCO, Report of the IBC on Updating Its Reflection on the Human Genome and Human Rights, 2015.
    22. World Health Organization, Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing, A Draft Governance Framework for Human Genome Editing, 2020.

     

    References In Persian:

    - Articles

    1. Ardekani, A. M. (2016). The Human Genome Project: Ethical and Legal Challenges in Human Societies. Bioethics Journal, 19(1), 102-124 (In Persian).
    2. Emam, F. (2007). Legal and Moral Aspects of Cloning. Journal of Legal Research, 6(11), 235-249 (In Persian).
    3. Mousavi, S. F., & Mirmohammadi, M. (2017). International Legal Regime Governing Human and Non-Human Genetic Resources. International Law Review, 34(56), 61-86 (In Persian).
    4. Musazadeh, M. (2007). Human Dignity and Reproductive Cloning. Journal of Legal Research, 6(11), 251-320 (In Persian).
    5. Raseskh, M. (2000). Debate on Life: An Overview of Abortion Theories, Legal Studies, 38(1), 165-207 (In Persian).