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Moral equality and reprogenetic autonomy in the genomic era

Published online by Cambridge University Press:  30 October 2024

Ozan Gurcan*
Affiliation:
California Institute of Technology, Pasadena, CA, USA University of Ottawa, Ottawa, Ontario, Canada
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Abstract

In this paper, I question the argument from human dignity found in the Universal Declaration on the Human Genome and Human Rights (UDHGHR) and in the recent views of the International Bioethics Committee (IBC). I focus on what this argument says about the permissibility of two broad categories of reprogenetic choices that may be available to prospective parents in the genomic era. The argument from human dignity holds that non-medical genetic selection and somatic enhancements ought to be prohibited because they violate the principle of human dignity. I argue that human dignity need not be violated by the enterprise of human genetic selection/somatic enhancement if reasonable social safeguards are established. In particular, I argue that respecting the reprogenetic choices of the decision-maker is paramount within the boundaries of (i) prohibiting the infliction of a shortened lifespan or pain upon the child; (ii) prohibiting the actualization of demeaning beliefs or intentions such as viewing certain groups as inferior; (iii) prohibiting the choice resulting from an expression of unwillingness to love and care for the child; and, with respect to somatic gene enhancements in particular, (iv) the potentially unjustified effects of the enhancement on others, if any, are reasonably addressable (and addressed) via social modifications so as to ensure the enhancement no longer risks adversely affecting them. With these limits, reprogenetic autonomy cannot be said to undermine the dignity of humans by creating unjustified harms or expressing demeaning ideas.

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Perspective Essay
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© The Author(s), 2024. Published by Cambridge University Press on behalf of The Association for Politics and the Life Sciences

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References

Adjin-Tettey, E. (2021). Striking the right balance: does the genetic non-discrimination act promote access to insurance? McGill JL & Health, 14(2), 145176.Google Scholar
Andorno, R. (2009). Human dignity and human rights. In ten Have, H. A. M. J. & Jean, M. S. (Eds.), The UNESCO universal declaration on bioethics and human rights: Background, principles and application (pp. 9098).Google Scholar
Andorno, R. (2011). Four paradoxes of human dignity. In Joerden, J. C. (Ed.), Menschenwürde und Moderne Medizintechnik (pp. 131140). Nomos.Google Scholar
Asch, A., & Wasserman, D. (2015). Reproductive testing for disability. In Arras, J., Fenton, E., & Kukla, R. (Eds.), Routledge companion to bioethics (pp. 417432). Routledge.Google Scholar
Boggio, A., Romano, C., & Almqvist, J. (2019). Towards a human rights framework for the regulation of human germline genome modification. In Boggio, A., Romano, C., & Almqvist, J. (Eds.), Human germline genome modification and the right to science: A comparative study of national laws and policies (pp. 585616). Cambridge University Press.Google Scholar
Bostrom, N. (2005). In defense of posthuman dignity. Bioethics, 19(3), 202214.CrossRefGoogle ScholarPubMed
Buchanan, A. (1995). Equality of opportunity and genetic intervention. Social Philosophy and Policy Foundation, 12(2), 105135.CrossRefGoogle ScholarPubMed
Buchanan, A. (2009). Moral status and human enhancement. Philosophy and Public Affairs, 37(4), 346381.CrossRefGoogle Scholar
Buchanan, A., Brock, D. W., Daniels, N., & Wikler, D. (2000). From chance to choice: Genetics and justice. Cambridge University Press.CrossRefGoogle Scholar
Chadwick, R., & Levitt, M. (1998). Genetic technology: A threat to deafness. Medicine, Health Care and Philosophy, 1(3), 209215.CrossRefGoogle ScholarPubMed
Charo, R. A. (2018). Germline engineering and human rights. AJIL Unbound, 112, 344349.CrossRefGoogle Scholar
Coelho, R., Maher, J., Gaind, K. S., & Lemmens, T. (2023). The realities of Medical Assistance in Dying in Canada. Palliative and Supportive Care, 21, 871878.Google ScholarPubMed
Dean, R. (2018). Neurodiversity and the Rejection of Cures. In Hill, T. Jr. & Cureton, A. (Eds.), Disability in practice: attitudes, policies, and relationships (pp. 115133). Oxford University Press.Google Scholar
Dryzek, J. S., Nicol, D., Niemeyer, S., Pemberton, S., Curato, N., Bachtiger, A., Batterham, P., Bedsted, B., Burall, S., Burgess, M., Burgio, G., Castelfranchi, Y., Chneiweiss, H., Church, G., Crossley, M., de Vries, J., Farooque, M., Hammond, M., He, B., …, Vergne, A. (2020). Global citizen deliberation on genome editing. Science, 369, 14351437.Google ScholarPubMed
Erden, Y. J., & Brey, P. A. E. (2022). Ethics guidelines for human enhancement R&D. Science, 378(6622), 835838.CrossRefGoogle ScholarPubMed
Farrelly, C. (2021). How should we theorize about justice in the genomic era? Politics and the Life Sciences, 40(1), 106125.CrossRefGoogle ScholarPubMed
Feeney, O. (2024). Catching the next wave? The relationship between UNESCO and developments in genomics. European Journal of Human Genetics, 12.Google ScholarPubMed
Garrison, H., Agostinho, M., Alvarez, L., Bekaert, S., Bengtsson, L., Broglio, E., Couso, D., Gomes, R. A., Ingram, Z., Martinez, E., Mena, A. L., Nickel, D., Norman, M., Pinheiro, I., Solis-Mateos, M., & Bertero, M. G. (2021). Involving society in science: Reflections on meaningful and impactful stakeholder engagement in fundamental research. EMBO Reports, 22(e54000), 17.Google ScholarPubMed
Gaydarska, H., Takashima, K., Shahrier, S., Raz, A., & Minari, J. (2024). The interplay of ethics and genetic technologies in balancing the social valuation of the human genome in UNESCO declarations. European Journal of Human Genetics, 16.Google ScholarPubMed
Goering, S., & Klein, E. (2020). Neurotechnologies and justice by, with, and for disabled people. In Wasserman, D. & Cureton, A. (Eds.), The Oxford handbook of philosophy and disability (pp. 616632). Oxford University Press.Google Scholar
Gregg, B. (2022). Regulating genetic engineering guided by human dignity, not genetic essentialism. Politics and the Life Sciences, 41(1), 6075.CrossRefGoogle Scholar
Griffin, J. (2008). On human rights. Oxford University Press.Google Scholar
Groce, N. E. (1985). Everyone here spoke sign language: Hereditary deafness on Martha’s vineyard. Harvard University Press.Google Scholar
Ha’am, B. A. (2017). Deafness as disability: Countering aspects of the medical view. Public Reason, 9(1–2), 7998.Google Scholar
Hansson, S. O. (2017). Technology and distributive justice. In Hansson, S. O. (Ed.), The ethics of technology: Methods and approaches (pp. 5165). Rowman & Littlefield International.Google Scholar
Harmon, S. (2005). The significance of UNESCO’s universal declaration on the human genome and human rights. SCRIPTed., 2, 1847.Google Scholar
Harris, J. (2001). One principle and three fallacies of disability studies. Journal of Medical Ethics, 27, 383387.CrossRefGoogle ScholarPubMed
Harris, J. (2007). Enhancing evolution: The ethical case for making better people. Princeton University Press.Google Scholar
Hellman, D. (2003). What makes genetic discrimination exceptional? American Journal of Law & Medicine, 29, 77116.CrossRefGoogle ScholarPubMed
Hellman, D. (2018). Indirect discrimination and the duty to avoid compounding injustice. In Collins, H. & Khaitan, T. (Eds.), Foundations of indirect discrimination law (pp. 105122). Hart Publishing.Google Scholar
Hrouda, B. E. (2016). Playing God?: An examination of the legality of CRISPR germline editing technology under the current international regulatory scheme and the Universal Declaration on the Human Genome and Human Rights. Georgia Journal of International and Comparative Law, 45, 221241.Google Scholar
Iltis, A. S., Hoover, S., & Matthews, K. R. W. (2021). Public and stakeholder engagement in developing human heritable genome editing policies: What does it mean and what should it mean? Frontiers in Political Science, 3(730869), 113.CrossRefGoogle Scholar
International Bioethics Committee (IBC). (2015, October 2). Report of the IBC on updating its reflection on the human genome and human rights (SHS/YES/IBC-22/15/2 REV.2) (pp. 130). UNESCO.Google Scholar
Kaposy, C. (2023). Prospects for limiting access to prenatal genetic information about Down syndrome in light of the expansion of prenatal genomics. The New Bioethics, 29(3), 226246.CrossRefGoogle ScholarPubMed
Kass, L. (2003). Ageless bodies, happy souls: Biotechnology and the pursuit of perfection. New Atlantis, 1, 928.Google Scholar
Lemmens, T. (2023). When death becomes therapy: Canada’s troubling normalization of health care provider ending of life. The American Journal of Bioethics, 23(11), 7984.Google ScholarPubMed
Lemke, A. A., & Harris-Wai, J. N. (2015). Stakeholder engagement in policy development: challenges and opportunities for human genomics. Genetics in Medicine, 17(12), 949957.CrossRefGoogle ScholarPubMed
Lenoir, N. (1999). Universal declaration on the human genome and human rights: the first legal and ethical framework at the global level. Columbia Human Rights Law Review, 30(3), 537588.Google ScholarPubMed
Lemoine, M., & Ravitsky, V. (2020). The Down Syndrome Information Act and “mere difference”: redefining the scope of prenatal testing conversations? In Cohen, I. G., Shachar, C., Silvers, A., & Stein, M. A. (Eds.), Disability, health, law, and bioethics (pp. 6476). Cambridge University Press.CrossRefGoogle Scholar
MacKellar, C. (2021). Why human germline genome editing is incompatible with equality in an inclusive society. The New Bioethics, 27(1), 1929.Google Scholar
Macklin, R. (2003). Dignity is a useless concept. BMJ, 327(7429), 14191420.CrossRefGoogle ScholarPubMed
Meltzer, C. C., Rommelfanger, G., Kinlaw, K., Banja, J. D., & Wolpe, P. R. (2014). Guidelines for the ethical use of neuroimages in medical testimony: Report of a multidisciplinary consensus conference. American Journal of Neuroradiology, 35, 632637.Google ScholarPubMed
Moreau, S. (2020). Faces of Inequality: a theory of wrongful discrimination. Oxford University Press.CrossRefGoogle Scholar
Narayan, U. (1988). Working together across difference: some considerations on emotions and political practice. Hypatia, 3(2), 3147.Google Scholar
The National Academies of Sciences, Engineering, and Medicine. (2023, March 08). Statement from the Organising Committee of the Third International Summit on Human Genome Editing. Royal Society. Retrieved from https://royalsociety.org/news/2023/03/statement-third-international-summit-human-genome-editing/Google Scholar
O’Neill, M. (2006). Genetic information, life insurance, and social justice. The Monist, 89(4), 567592.CrossRefGoogle Scholar
Perry, M. W. (2023). “Human” dignity beyond the human. Critical Review of International Social and Political Philosophy, 123.Google Scholar
Porter, A. (2017). Bioethics and transhumanism. Journal of Medicine and Philosophy, 42, 237260.Google ScholarPubMed
President’s Council on Bioethics. (2003). Beyond therapy: Biotechnology and the pursuit of happiness. A Report by the President’s Council on Bioethics.Google Scholar
Quong, J. (2010). Liberalism without perfection. Oxford University Press.Google Scholar
Raposo, V. L. (2019). Gene editing, the mystic threat to human dignity. Bioethical Inquiry, 16, 249257.Google ScholarPubMed
Resnik, D. B. (2000). The moral significance of the therapy-enhancement distinction in human genetics. Cambridge Quarterly of Healthcare Ethics, 9, 365377.Google ScholarPubMed
Resnik, D. B. (2014). Genetics and personal responsibility for health. New Genetics and Society, 33(2), 113125.CrossRefGoogle ScholarPubMed
Resnik, D. B., & Elliott, K. (2016). The ethical challenges of socially responsible science. Accountability in Research, 23(1), 3146.CrossRefGoogle ScholarPubMed
Riddle, C. (2014). Disability and justice: The capabilities approach in practice. Lexington Books.CrossRefGoogle Scholar
Robinson, H. (2023). Prenatal testing, disability equality, and the limits of the law. The New Bioethics, 29(3), 202215.Google ScholarPubMed
Roduit, J. A. R., Baumann, H., & Heilinger, J.-C. (2013). Human enhancement and perfection. Journal of Medical Ethics, 39(10), 647650.CrossRefGoogle ScholarPubMed
Ryan, P. (2017). “Technocracy,” democracy … and corruption and trust. Policy Sciences, 51, 131139.Google Scholar
Scully, J. L. (2022). Being disabled and contemplating disabled children. In Reynolds, J. M. & Wieseler, C. (Eds.), The Disability Bioethics Reader (pp. 116124). Routledge.CrossRefGoogle Scholar
Singer, P. (1989). All animals are equal. In Regan, T. & Singer, P. (Eds.), Animal rights and human obligations (pp. 215226). Oxford University Press.Google Scholar
Segers, S., & Mertes, H. (2020). Does human genome editing reinforce or violate human dignity? Bioethics, 34(1), 3340.Google ScholarPubMed
Sparrow, R. (2011). A Not-So-New EUGENICS: Harris and Savulescu on human enhancement. The Hastings Center Report, 41(1), 3242.Google ScholarPubMed
Stramondo, J. A. (2022). The goals of biomedical technology. In Reynolds, J. M. & Wieseler, C. (Eds.), The disability bioethics reader (pp. 358366). Routledge.CrossRefGoogle Scholar
Sugarman, J., Clark, A., Fishkin, J., Kato, K., McCormack, K., Munsie, M., Peluso, M. J., Rene, N., & Solomon, S. L. (2023). Critical considerations for public engagement in stem cell-related research. Stem Cell Rep, 18(2), 420426.Google ScholarPubMed
United Nations Educational, Scientific and Cultural Organization (UNESCO). (1997, November 11). Universal declaration on the human genome and human rights. https://www.unesco.org/en/ethics-science-technology/human-genome-and-human-rightsGoogle Scholar
United Nations General Assembly. (1948, December 10). The universal declaration of human rights. udhr.pdf (un.org)Google Scholar
Waldron, J. (2017). One another’s equals. Harvard University Press.CrossRefGoogle Scholar
Waldron, J. (2024, April 15). The crisis of judicial review. http://doi.org/10.2139/ssrn.4763558CrossRefGoogle Scholar
Walzer, M. (1983). Spheres of justice. Basic Books.Google Scholar
Wallis, J. M. (2019). Is it ever morally permissible to select for deafness in one’s child? Medicine, Health Care and Philosophy, 23, 315.Google Scholar
Wang, L., Liang, X., & Zhang, W. (2022). Genome editing and human rights: Implications of the UNGPs. Biosafety and Health, 4(6), 386391.CrossRefGoogle Scholar
Wee, M. (2022). Therapy, enhancement, and the social model of disability. In Sands, D. (Ed.), Bioethics and the posthumanities (1st ed., pp. 1524). Routledge.CrossRefGoogle Scholar