Navigating the Ethics of Genome Editing and Heritability
Main Article Content
Abstract
This article explores the role of ethics in contributing to a deliberative discussion on the necessary principles that ought to shape future governance of an emerging technology – Heritable Human Genome Editing (‘HHGE’). An ethical evaluation will be undertaken to identify some of the considerations pertaining to its intergenerational impact. This will be explored through the lens of genetic exceptionalism, human dignity and welfare as guiding ethical principles. The identification of and compliance with key ethical principles reflects a deontological approach. In practice, these principles are applied to achieve an outcome that maximises the welfare of future offspring. While this underlying rationale reflects a utilitarian approach, the practical enforcement of these ethical theories raises questions pertaining to their potential permeability. It is recognised these theories are rightly independent schools of thought. However, in practice, they can be permeable. Ethics, as applied in practice, does not necessarily require a “one theory fits all” approach to an ethical evaluation of this technology. While an outcome which maximises the welfare of future offspring is paramount, the means to achieve this are also important. These principles should inform the basis of an ethical evaluation in determining permissible uses of HHGE. Specifically, to prevent, treat or correct genetic disease.
Article Details
How to Cite
PANDOS, Olga C..
Navigating the Ethics of Genome Editing and Heritability.
Medical Research Archives, [S.l.], v. 12, n. 5, may 2024.
ISSN 2375-1924.
Available at: <https://esmed.org/MRA/mra/article/view/5336>. Date accessed: 04 dec. 2024.
doi: https://doi.org/10.18103/mra.v12i5.5336.
Section
Research Articles
The Medical Research Archives grants authors the right to publish and reproduce the unrevised contribution in whole or in part at any time and in any form for any scholarly non-commercial purpose with the condition that all publications of the contribution include a full citation to the journal as published by the Medical Research Archives.
References
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42. Nuffield Council on Bioethics. Genome Editing and Human Reproduction. Nuffield Council on Bioethics; 2018.
43. Nuffield Council on Bioethics. Genome Editing: An Ethical Review. Nuffield Council on Bioethics; 2016:1-128.
44. Lanphier E, Urnov F, Ehlen Haecker S, Werner M, Smolenski J. Don’t edit the human germ line. Nature. 2015;519:410-411.
45. Habermas J. The Future of Human Nature. Polity Press; 2003.
46. Feinberg J. The Child’s Right to an Open Future. In: Freedom and Fulfillment: Philosophical Essays. Princeton University Press; 1992:76-97.
47. Blackburn S. Oxford Dictionary of Philosophy. 3rd ed. Oxford University Press; 2016.
48. Harris J. Germline Manipulation and Our Future Worlds. Am J Bioeth. 2015;15(12):30-34.
49. The 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. The Danish Council on Ethics; 2016:3-12.
50. Garrison NA, Brothers KB, Goldenberg AJ, Lynch JA. Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism. Am J Bioeth. 2019;19(1):51-63.
51. Pierce BA. Genetics: A Conceptual Approach. 5th ed. Freeman; 2014.
52. Messer N. Human cloning and genetic manipulation: some theological and ethical issues. Stud Christ Ethics. 1999;12:1-16.
53. Doudna JA, Sternberg SH. Opinion: Should we use gene editing to produce disease-free babies? A scientist who helped discover CRISPR weighs in. Science. Published online August 22, 2017:1-9.
54. German Ethics Council. Intervening in the Human Germline: Opinion. German Ethics Council; 2019:5-58.
55. Council of Europe. Explanatory Report to the 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. Council of Europe; 1997:1-26.
56. Savulescu J, Pugh J, Douglas T, Gyngell C. The moral imperative to continue gene editing research on human embryos. Protein Cell. 2015;6(7):476-479.
57. Gyngell C, Bowman-Smart H, Savulescu J. Moral reasons to edit the human genome: picking up from the Nuffield report. J Med Ethics. 2019;45(8):514-523.
58. Savulescu J. Procreative Beneficence: Why We Should Select the Best Children. Bioethics. 2001;15(5/6):413-426.
59. Bonas U, Friedrich B, Fritsch J, et al. Ethical and Legal Assessment of Genome Editing in Research on Human Cells. Leopoldina German National Academy of Sciences; 2017:17-27.
60. WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing. Human Genome Editing: A Framework for Governance. World Health Organisation; 2021:v-87.
2. Caulfield T. Ethics Hype? Hastings Center; 2016:13-16.
3. Capps B, Chadwick R, Joly Y, Mulvihill JJ, Lysaght T, Zwart H. Falling giants and the rise of gene editing: ethics, private interests and the public good. Hum Genomics. 2017;11(20):1-10.
4. Baylis F, Darnovsky M, Hasson K, Krahn TM. Human Germline and Heritable Genome Editing: The Global Policy Landscape. CRISPR J. 2020;3(5):365-377.
5. Baltimore D. Introductory Remarks for the Third International Genome Editing Summit 2023. Presented at: March 6, 2023; London, United Kingdom.
6. Pandos OC. Somatic genome editing therapies are becoming a reality - but debate over ethics, equitable access and governance continue. The Conversation. https://theconversation.com/somatic-genome-editing-therapies-are-becoming-a-reality-but-debate-over-ethics-equitable-access-and-governance-continue-201234. Published March 11, 2023.
7. Lovell-Badge R, Baltimore D, Baylis F, et al. Statement from the Organising Committee of the Third International Summit on Human Genome Editing. In: ; 2023:1-2.
8. Pandos OC. Traversing Uncharted Territory? The Legislative and Regulatory Landscape of Heritable Human Genome Editing in Australia. Fed Law Rev. 2024;52(1):75-102.
9. Mitochondrial Donation Law Reform (Maeve’s Law) Act 2022 (Cth).
10. Holm S. Let Us Assume That Gene Editing is Safe - The Role of Safety Arguments in the Gene Editing Debate. Camb Q Healthc Ethics. 2019;28:100-111.
11. Guttinger S. Trust in Science: CRISPR-Cas9 and the Ban on Human Germline Editing. Sci Eng Ethics. 2018;24:1077-1096.
12. Netherlands Commission on Genetic Modification, Health Council of the Netherlands. Editing Human DNA: Moral and Social Implications of Germline Genetic Modification. Netherlands Commission on Genetic Modification & Health Council of the Netherlands; 2017:5-88.
13. van Dijke I, Bosch L, Bredenoord AL, Cornel M, Repping S, Hendriks S. The ethics of clinical applications of germline genome modification: a systematic review of reasons. Hum Reprod. 2018;33(9):1777-1796.
14. Howard HC, van El CG, Forzano F, et al. 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. Eur J Hum Genet. 2018;26:1-11.
15. European Academies Science Advisory Council. Genome Editing: Scientific Opportunities, Public Interests and Policy Options in the European Union.; 2017:1-34.
16. Shukla-Jones A, Friedrichs S, Winickoff DE. Gene Editing in an International Context: Scientific, Economic and Social Issues across Sectors. Organisation for Economic Co-operation and Development: Science, Technology and Industry; 2018:4-51.
17. Braun M, Dabrock P. “I bet you won’t”: The science-society wager on gene editing techniques. EMBO Rep. 2016;17(3):279-280.
18. Nuffield Council on Bioethics. Emerging Biotechnologies: Technology, Choice and the Public Good. Nuffield Council on Bioethics; 2012:5-198.
19. Baylis F. The Potential Harms of Human Gene Editing Using CRISPR-Cas9. Clin Chem. 2018;64(3):489-491.
20. National Academies of Sciences, Engineering and Medicine, The Royal Society. Heritable Human Genome Editing.; 2020.
21. Mathews DJ, Lovell-Badge R. A path through the thicket. Nature. 2015;527:159-161.
22. Daley G. Introduction to the Special Issue on CRISPR. Perspect Biol Med. 2020;63(1):1-13.
23. Isasi R, Knoppers BM. Oversight of human inheritable genome modification. Nat Biotechnol. 2015;33(5):454-455.
24. Xafis V, Schaefer GO, Labude MK, et al. Germline genome modification through novel political, ethical, and social lenses. PLOS Genet. 2021;17(9):1-13.
25. Mulvihill JJ, Capps B, Joly Y, Lysaght T, Zwart HA, Chadwick R. Ethical issues of CRISPR technology and gene editing through the lens of solidarity. Br Med Bull. 2017;122:17-29.
26. National Academies of Sciences, Engineering and Medicine. Human Genome Editing: Science, Ethics and Governance.; 2017.
27. Sugarman J. Ethics and germline gene editing. EMBO Rep. 2015;16(8):879-880.
28. Ormond KE, Bombard Y, Bonham VL, et al. The clinical application of gene editing: ethical and social issues. Pers Med. 2019;16(4):337-350.
29. Doudna JA. The promise and challenge of therapeutic genome editing. Nature. 2020;578:229-236.
30. Ishii T. Germ line genome editing in clinics: the approaches, objectives and global society. Brief Funct Genomics. 2017;16(1):46-56.
31. Brokowski C. Do CRISPR Germline Ethics Statements Cut It? CRISPR J. 2018;1(2):115-125.
32. Adashi EY, Cohen IG. Editing the Genome of the Human Germline: May Cool Heads Prevail. Am J Bioeth. 2015;15(12):40-41.
33. Lander ES, Baylis F, Zhang F, et al. Adopt a moratorium on heritable human genome editing. Nature. 2019;567:165-168.
34. European Group on Ethics in Science and New Technologies. Ethics of Genome Editing. European Group on Ethics in Science and New Technologies; 2021.
35. Ranisch R. Germline genome editing versus preimplantation genetic diagnosis: Is there a case in favour of germline interventions? Bioethics. 2020;34:60-69.
36. Daley G, Lovell-Badge R, Steffann J. After the Storm — A Responsible Path for Genome Editing. N Engl J Med. 2019;380:897-899.
37. Rubeis G, Steger F. Risks and benefits of human germline genome editing: An ethical analysis. Asian Bioeth Rev. 2018;10:133-141.
38. Committee on Social Affairs, Health and Sustainable Development. The Use of New Genetic Technologies in Human Beings. Council of Europe; 2017:3-12.
39. Comité Consultatif National D’éthique. Ethical Challenges of Gene Editing: Between Hope and Caution. Comité Consultatif National D’éthique; 2019:5-38.
40. de Wert G, Heindryckx B, Pennings G, et al. Responsible innovation in human germline gene editing: Background document to the recommendations of ESHG and ESHRE. Eur J Hum Genet. 2018;26:450-470.
41. Friedmann T, Jonlin EC, King NM, et al. ASGCT and JSGT Joint Position Statement on Human Genomic Editing. Mol Ther. 23(8):1282.
42. Nuffield Council on Bioethics. Genome Editing and Human Reproduction. Nuffield Council on Bioethics; 2018.
43. Nuffield Council on Bioethics. Genome Editing: An Ethical Review. Nuffield Council on Bioethics; 2016:1-128.
44. Lanphier E, Urnov F, Ehlen Haecker S, Werner M, Smolenski J. Don’t edit the human germ line. Nature. 2015;519:410-411.
45. Habermas J. The Future of Human Nature. Polity Press; 2003.
46. Feinberg J. The Child’s Right to an Open Future. In: Freedom and Fulfillment: Philosophical Essays. Princeton University Press; 1992:76-97.
47. Blackburn S. Oxford Dictionary of Philosophy. 3rd ed. Oxford University Press; 2016.
48. Harris J. Germline Manipulation and Our Future Worlds. Am J Bioeth. 2015;15(12):30-34.
49. The 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. The Danish Council on Ethics; 2016:3-12.
50. Garrison NA, Brothers KB, Goldenberg AJ, Lynch JA. Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism. Am J Bioeth. 2019;19(1):51-63.
51. Pierce BA. Genetics: A Conceptual Approach. 5th ed. Freeman; 2014.
52. Messer N. Human cloning and genetic manipulation: some theological and ethical issues. Stud Christ Ethics. 1999;12:1-16.
53. Doudna JA, Sternberg SH. Opinion: Should we use gene editing to produce disease-free babies? A scientist who helped discover CRISPR weighs in. Science. Published online August 22, 2017:1-9.
54. German Ethics Council. Intervening in the Human Germline: Opinion. German Ethics Council; 2019:5-58.
55. Council of Europe. Explanatory Report to the 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. Council of Europe; 1997:1-26.
56. Savulescu J, Pugh J, Douglas T, Gyngell C. The moral imperative to continue gene editing research on human embryos. Protein Cell. 2015;6(7):476-479.
57. Gyngell C, Bowman-Smart H, Savulescu J. Moral reasons to edit the human genome: picking up from the Nuffield report. J Med Ethics. 2019;45(8):514-523.
58. Savulescu J. Procreative Beneficence: Why We Should Select the Best Children. Bioethics. 2001;15(5/6):413-426.
59. Bonas U, Friedrich B, Fritsch J, et al. Ethical and Legal Assessment of Genome Editing in Research on Human Cells. Leopoldina German National Academy of Sciences; 2017:17-27.
60. WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing. Human Genome Editing: A Framework for Governance. World Health Organisation; 2021:v-87.