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How should we theorize about justice in the genomic era?

Published online by Cambridge University Press:  26 April 2021

Colin Farrelly
Colin Farrelly*
Affiliation:
Queen’s University
*
Correspondence: Colin Farrelly, Queen’s University. Email: farrelly@queensu.ca
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Abstract

The sequencing of the human genome and advances in gene therapy and genomic editing, coupled with embryo selection techniques and a potential gerontological intervention, are some examples of the rapid technological advances of the “genetic revolution.” This article addresses the methodological issue of how we should theorize about justice in the genomic era. Invoking the methodology of non-ideal theory, I argue that theorizing about justice in the genomic era entails theorizing about (1) the new inequalities that the genetic revolution could exacerbate (e.g., genetic discrimination, disability-related injustices, and gender inequality), and (2) those inequalities that the genetic revolution could help us mitigate (e.g., the risks of disease in early and late life). By doing so, normative theorists can ensure that we develop an account of justice that takes seriously not only individual rights, equality of opportunity, the cultural and sociopolitical aspects of disability, and equality between the sexes, but also the potential health benefits (to both individuals and populations) of attending to the evolutionary causes of morbidity and disability.

Keywords

geneticsgenome editingjusticeideal theorynonideal theoryaging
Type
Perspective
Information
Politics and the Life Sciences , Volume 40 , Issue 1 , Spring 2021 , pp. 106 - 125
Copyright
© The Author(s) 2021. Published by Cambridge University Press on behalf of Association for Politics and the Life Sciences

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References

Agar, N. (2004). Liberal eugenics: In defence of human enhancement. Blackwell.CrossRefGoogle Scholar
Aidoo, M., Terlouw, D. J., Kolczak, M., McElroy, P. D., Kuile, F. O., Kariuki, S., Nahlen, B. L., Lal, A. A., & Udhayakumar, V. (2002). Protective effects of the sickle cell gene against malaria morbidity and mortality. The Lancet, 359(9314), 1311–1312.CrossRefGoogle ScholarPubMed
Alper, J. (2002). Genetic complexity in human disease and behaviour. In Alper, J. (Ed.), The double-edged helix: Social implications of genetics in a diverse society (pp. 17–38). Johns Hopkins University Press.Google Scholar
American Academy of Pediatrics. (2020). Children and COVID-19: State-level data report. Retrieved October 10, 2020, from https://services.aap.org/en/pages/2019-novel-coronavirus-covid-19-infections/children-and-covid-19-state-level-data-report/Google Scholar
Barzilai, N., Appleby, J. C., Austad, S. N., Cuervo, A. M., Kaeberlein, M., Gonzalez-Billault, C., Lederman, S., Stambler, I., & Sierra, F. (2020). Geroscience in the age of COVID-19. Aging and Disease, 11(4), 725–729.CrossRefGoogle ScholarPubMed
Barzilai, N., Crandall, J. P., Kritchevsky, S. B., & Espeland, M. A. (2016). Metformin as a tool to target aging. Cell Metabolism, 23(6), 1060–1065.CrossRefGoogle ScholarPubMed
Baylis, F. (2019). Altered inheritance: CRISPR and the ethics of human genome editing. Harvard University Press.CrossRefGoogle Scholar
Benyamin, B., Pourcain, BSt., Davis, O. S., Davies, G., Hansell, N. K., Brion, M.-J. A., Kirkpatrick, R. M., Cents, R. A. M., Franić, S., Miller, B. M., Haworth, C. M. A., Meaburn, E., Pricce, T. S., Evans, D. M., Timpson, N., Kemp, J., Ring, S., McArdle, W., Medland, S. E., … Visscher, P. M. (2014). Childhood intelligence is heritable, highly polygenic and associated with FNBP1L. Molecular Psychiatry, 19(2), 253–58.CrossRefGoogle ScholarPubMed
Bevilacqua, L., & Goldman, D. (2009). Genes and addictions. Clinical Pharmacology Therapy, 85(4), 359–361.CrossRefGoogle ScholarPubMed
Boston University. (2020). Why study centenarians? An overview. Retrieved January 25, 2021, from http://www.bumc.bu.edu/centenarian/overview/Google Scholar
Brock, D. (2000). Broadening the bioethics agenda. Kennedy Institute of Ethics Journal, 10(1), 21–38.Google ScholarPubMed
Buchanan, A. (2011). Beyond humanity? Oxford University Press.CrossRefGoogle Scholar
Buchanan, A., Brock, D. W., Daniels, N., & Wikler, D. (2000). From chance to choice: Genetics and justice. Cambridge University Press.CrossRefGoogle Scholar
Bunyavanich, S., Grant, C., & Vicencio, A. (2020). Racial/ethnic variation in nasal gene expression of transmembrane serine protease 2. JAMA Network Open, 323(19), 1891–1892.Google Scholar
Butler, R. (1969). Age-ism: Another form of bigotry. The Gerontologist, 9(1), 243–246.CrossRefGoogle ScholarPubMed
Butler, R., Miller, R. A., Perry, D., Carnes, B. A., Williams, T. F., Kirkwood, T., Martin, G. M., & Olshansky, S. J. (2008). New model of health promotion and disease prevention for the 21st Century. British Medical Journal, 337(7662), 149–150.CrossRefGoogle ScholarPubMed
Carnes, B., Olshansky, J., & Grahn, D. (2003). Biological evidence for limits to the duration of life. Biogerontology, 4, 31–45.CrossRefGoogle ScholarPubMed
Centers for Disease Control and Prevention. (2019, August 13). Recommendations: Women & folic acid. Accessed October 10, 2020, https://www.cdc.gov/ncbddd/folicacid/recommendations.htmlGoogle Scholar
Centers for Disease Control and Prevention. (2020a). COVID-19 hospitalization and death by age. Retrieved February 11, 2021, from https://www.cdc.gov/nchs/covid19/mortality-overview.htmGoogle Scholar
Centers for Disease Control and Prevention. (2020b, December 16). Data & statistics on sickle cell disease. https://www.cdc.gov/ncbddd/sicklecell/data.htmlGoogle Scholar
Chadwick, R. (1992). Ethics, reproduction, and genetic control (Revised ed.). Routledge.Google Scholar
Champagne, F., & Curley, J. (2012). Genetics and epigenetics of parental care. In Royle, N., Smiseth, P., & Köllike, M. (Eds.), The Evolution of Parental Care (pp. 304–326). Oxford University Press.CrossRefGoogle Scholar
Covid Human Genetic Effort. (2020). Hypothesis: Monogenic causes of susceptibility and resistance to SARS-CoV-2 infection. Retrieved January 27, 202, from https://www.covidhge.com/aboutGoogle Scholar
Curchin, K. (2007). Evading the paradox of universal self-ownership. Journal of Political Philosophy, 15, 484–494.CrossRefGoogle Scholar
Cyranoski, D., & Ledford, H. (2018, November 27). How the genome-edited babies revelation will affect research. Nature News. https://www.nature.com/articles/d41586-018-07559-8CrossRefGoogle Scholar
Daniels, N. (1985). Just health care. Cambridge University Press.10.1017/CBO9780511624971CrossRefGoogle ScholarPubMed
Daniels, N. (2008). Just health. Cambridge University Press.Google Scholar
de Melo-Martin, I. (2004). On our obligation to select the best children: A reply to Savulescu. Bioethics, 18(1), 72–83.CrossRefGoogle ScholarPubMed
Dupras, C., Ravitsky, V., & Williams-Jones, B. (2014). Epigenetics and the environment in bioethics. Bioethics, 28(7), 327–334.10.1111/j.1467-8519.2012.02007.xCrossRefGoogle ScholarPubMed
Farrelly, C. (2007). Justice in ideal theory: a refutation. Political Studies, 55, 844–864.10.1111/j.1467-9248.2007.00656.xCrossRefGoogle Scholar
Farrelly, C. (2010). Equality and the Duty to Retard Human Aging. Bioethics, 24(8), 384–394.CrossRefGoogle Scholar
Farrelly, C. (2016). Biologically modified justice. Cambridge University Press.10.1017/CBO9781316424155CrossRefGoogle Scholar
Farrelly, C. (2018). Genetics ethics: an introduction. Polity Press.Google Scholar
Finer, L., & Zolna, M. (2016). Declines in unintended pregnancy in the United States, 2008–2011. New England Journal of Medicine, 374(9), 843–852.CrossRefGoogle ScholarPubMed
Fowke, K. R., Nagelkerke, N. J., Kimani, J. N., Simonsen, J. N., Anzala, A. O., Bwayo, J. J., MacDonald, K. S., Ngugi, E. N., & Plummer, F. A. (1996). Resistance to HIV-1 infection among persistently seronegative prostitutes in Nairobi, Kenya. The Lancet, 348(9038), 1347–1351.CrossRefGoogle ScholarPubMed
Fowler, J., Baker, L., & Dawes, C. (2008). Genetic variation in political participation. American Political Science Review, 102(2), 233–248.10.1017/S0003055408080209CrossRefGoogle Scholar
Fowler, J. & Dawes, C. (2008). Two genes predict voter turnout. Journal of Politics, 70(3), 579–594.CrossRefGoogle Scholar
Galton, F. (1874). English men of science: Their nature and nurture. Macmillan.Google Scholar
Gonzalez, E., Kulkarni, H., Bolivar, H., Mangano, A., Sanchez, R., Catano, G., Nibbs, R. J., Freedman, B. I., Quinones, M. P., Bamshad, M. J., Murthy, K. K., Rovin, B. H., Bradley, W., Clark, R. A., Anderson, S. A., O’Connell, R. J., Agan, B. K., Ahuja, S. S., Bologna, , … & Ahuja, S. K. (2005). The influence of CCL3L1 gene-containing segmental duplications on HIV-1/AIDS susceptibility. Science, 307(5714), 1434–1440.CrossRefGoogle ScholarPubMed
Guégan, J. F., Prugnolle, F., & Thomas, F. (2008). Global spatial patterns of infectious disease. In Stearns, S. & Koella, J. C. (Eds.), Evolution in health and disease (pp. 19–30). Oxford University Press.Google Scholar
Gurven, M., & Kaplan, H. (2007). Longevity among hunter-gatherers: A cross-cultural examination. Population and Development Review, 33(2), 321–365.CrossRefGoogle Scholar
Habermas, J. (2003). The future of human nature. Polity Press.Google Scholar
Harris, J. (1993). Is gene therapy a form of eugenics? Bioethics, 7(2/3), 178–187.CrossRefGoogle ScholarPubMed
Harris, J. (2007). Enhancing evolution: The ethical case for making better people. Princeton University Press.Google Scholar
Hayflick, L. (2000). The future of ageing. Nature, 408(6809), 267–269.CrossRefGoogle ScholarPubMed
Holliday, R. (1999). Ageing in the 21st century. The Lancet, 354, SIV4.CrossRefGoogle ScholarPubMed
International Human Genome Sequencing Consortium. (2001). Initial sequencing and analysis of the human genome. Nature, 409(6822), 860–921.CrossRefGoogle Scholar
Kaeberlein, M., Rabinovitch, P., & Martin, G. (2015). Healthy aging: The ultimate preventative medicine. Science, 350(6265), 1191–1193.CrossRefGoogle ScholarPubMed
Karlsson, E., Kwiatkowski, D., & Sabeti, P. (2014). Natural selection and infectious disease in human populations. Nature Reviews Genetics, 15(6), 379–393.CrossRefGoogle ScholarPubMed
Kennedy, B. K., Berger, S. L., Brunet, A., Campisi, J., Cuervo, A. M., Epel, E. S., Franceschi, C., Lithgow, J. G., Morimoto, R. I., Pessin, J. E., Rando, T. A., Richardson, A., Schadt, E. E., Wyss-Coray, T., & Sierra, F. (2014). Geroscience: Linking aging to chronic disease. Cell, 159(4), 709–713.CrossRefGoogle ScholarPubMed
Lee, J., Wedow, R., Okbay, A., Kong, E., Maghzian, O., Zacher, M., Kguyen-Viet, T. A., Bowers, P., Sidorenko, J., Linner, R. K., Fontana, M. A., Kundu, T., Lee, C., Li, H., Li, R., Royer, R., Timshel, P. N., Walters, R. K., Willoughby, E. A., … & Cesarini, D. (2018). Gene discovery and polygenic prediction from a genome-wide association study of educational attainment in 1.1 million individuals. Nature Genetics, 50(8), 1112–1121.CrossRefGoogle ScholarPubMed
Lopalco, L. (2010). CCR5: From natural resistance to a new anti-HIV strategy. Viruses, 2(2), 574–600.CrossRefGoogle ScholarPubMed
Lykken, D., & Tellegen, A. (1996). Happiness is a stochastic phenomenon. Psychological Science, 7(3), 186–189.CrossRefGoogle Scholar
Mills, C. (2005). Ideal theory as ideology. Hypatia, 20(3), 165–183.Google Scholar
National Academies of Sciences, Engineering, and Medicine. (2017). Human genome editing: Science, ethics, and governance. National Academies Press.Google Scholar
National Institutes of Health. Fact Sheets. https://report.nih.gov/NIHfactsheets/ViewFactSheet.aspx?csid=43Google Scholar
Novelle, M. G., Ali, A., Diéguez, C., Bernier, M., & de Cabo, R. 2016. Metformin: A hopeful promise in aging research, Cold Spring Harbor Perspectives in Medicine, 6, a025932.CrossRefGoogle ScholarPubMed
Okbay, A., Baselmans, B. M. L., De Neve, J., Turley, P., Nivard, M. G., Fontana, M. A., Meddens, S. F. W., Linnér, R. K., Rietveld, C. A., Derringer, J., Gratten, J., Lee, J. J., Liu, J. Z., de Vlaming, R., Ahluwalia, T. S., Buchwald, J., Cavadino, A., Frazier-Wood, A. C., Furlotte, N. A., … & Cesarini, D. (2016). Genetic variants associated with subjective well-being, depressive symptoms, and neuroticism identified through genome-wide analyses. Nature Genetics, 48(6), 624–633.CrossRefGoogle ScholarPubMed
Olshansky, S. J. (2018). From lifespan to healthspan. JAMA, 320(13), 1323–1324.CrossRefGoogle ScholarPubMed
Olshansky, S. J., Carnes, B., & Cassel, C. (1993). The aging of the human species. Scientific American, 268(4), 46–52.CrossRefGoogle ScholarPubMed
O’Neill, O. (1996). Towards justice and virtue: A constructive account of practical reasoning. Cambridge University Press.CrossRefGoogle Scholar
Overall, C. (2012). Why have children? MIT Press.CrossRefGoogle Scholar
Palmore, E. (1999). Ageism: Negative and positive. Springer.Google Scholar
Pappas, C., Aguilar, P. V., Basler, C. F., Solorazano, A., Zeng, H., Perrone, L., Palese, P., Garcia-Sastre, A., Katz, J. M., & Tumpey, T. M. (2008). Single gene reassortants identify a critical role for PB1, HA, and NA in the high virulence of the 1918 pandemic influenza virus. Proceedings of the National Academy of Sciences, 105(8), 3064–3069.CrossRefGoogle Scholar
Perls, T., Kunkel, L., & Puca, A. (2002). The genetics of exceptional longevity. Journal of American Geriatrics Society, 50(2), 359–368.CrossRefGoogle Scholar
Pérusse, D., Neale, M. C., Heath, A., & Eaves, L. J. (1994). Human parental behavior: Evidence for genetic influence and potential implication for gene-culture transmission. Behavior Genetics, 24(4), 327–335.CrossRefGoogle ScholarPubMed
Phillips, K., Deverka, P., Hooker, G., Douglas, M. (2018). Genetic Test Availability And Spending: Where Are We Now? Where Are We Going? Health Affairs 37(5), 710–716.CrossRefGoogle ScholarPubMed
Powell, R., & Buchanan, A. (2011). Breaking evolution’s chains: The prospect of deliberate genetic modification in humans. Journal of Medicine and Philosophy, 36(1), 6–27.CrossRefGoogle ScholarPubMed
Rae, M. J., Butler, R. N., Campisi, J., de Gray, A. D. N. J., Finch, C. E., Gough, M., Martin, G. M., Vjig, J., Perrott, K. M., & Logan, B. J. (2010). The demographic and biomedical case for late-life interventions in aging. Science Translational Medicine, 2(40), 40cm21.CrossRefGoogle Scholar
Rawls, J. (1971). A theory of justice. Harvard University Press.Google Scholar
Reindal, S. M. (2000). Disability, gene therapy and eugenics—A challenge to John Harris. Journal of Medical Ethics, 26(2), 89–94.CrossRefGoogle ScholarPubMed
Resnick, D. (2000). The moral significance of the therapy-enhancement distinction in human genetics. Cambridge Quarterly of Healthcare Ethics, 9(3), 365–377.CrossRefGoogle Scholar
Rose, M. (2005). The long tomorrow: How advances in evolutionary biology can help us postpone aging. Oxford University Press.Google Scholar
Russell, B. (1924). Marriage and Morals. London.Google Scholar
Sandel, M. (2007). The case against perfection: Ethics in the age of genetic engineering. Harvard University Press.Google Scholar
Savulescu, J. (2001). Procreative beneficence: Why we should select the best children. Bioethics, 15(5/6), 413–426.CrossRefGoogle ScholarPubMed
Sebastiani, P., Solovieff, N., DeWan, A. T., Walsh, K. M., Puca, A., Hartley, S. W., Mellista, E., Andersen, S., Dworkis, D. A., Wilk, J. B., Myers, R. H., Steinberg, M. H., Montano, M., Baldwin, C. T., Hoh, J., & Perls, T. (2012). Genetic signatures of exceptional longevity in humans. PLOS ONE, 7(1), e29848.CrossRefGoogle ScholarPubMed
Sen, A. (2009). The idea of justice. Harvard University Press.CrossRefGoogle Scholar
Severe Covid-19 GWAS Group, Ellinghaus, D., Degenhardt, F., Bujanda, L., Buti, M., Albillos, A., Invernizzi, P., Fernández, J., Prati, D., Baselli, G., Asselta, R., Marit, M., Grimsrud, M., Milani, C., Aziz, F., Kässens, J., May, S., Wendorff, M., Wienbrandt, L., Uellendahl-Werth, F., Zheng, T., Yi, X., … & Karlsen, T. (2020). Genomewide association study of severe Covid-19 with respiratory failure. N Engl J Med 383(16): 1522–1534.Google ScholarPubMed
Shakeshaft, N., Trzaskowski, M., McMillan, A., Krapohl, E., Simpson, M. A., Cederlof, M., Larsson, H., Lichtenstein, P., & Plomin, R. (2015). Thinking positively: The genetics of high intelligence. Intelligence, 48, 123–132.CrossRefGoogle ScholarPubMed
Shnayderman, R. (2019). Germ-line genetic information as a natural resource as a means to achieving luck-egalitarian equality: Some difficulties. Res Publica, 25, 151–166.CrossRefGoogle Scholar
Simmons, A. J. (2010). Ideal and nonideal theory. Philosophy and Public Affairs, 38(1), 5–36.CrossRefGoogle Scholar
Simonsen, L., Clarke, M. J., Schnberger, L. B., Arden, N. H., Cox, N. J., & Fukuda, K. (1998). Pandemic versus epidemic influenza mortality: A pattern of changing age distribution. Journal of Infectious Diseases, 178(1), 53–60.CrossRefGoogle ScholarPubMed
Song, X., Delaney, M., Shah, R. K., Campos, J. M., Wessel, D. L., & DeBiasi, R. L. (2020). Comparison of clinical features of COVID-19 vs seasonal influenza A and B in US Children. JAMA Network Open, 3(9), e2020495.CrossRefGoogle Scholar
Steiner, H. (1994). An essay on rights. Blackwell.Google Scholar
Steiner, H. (2002). Self-ownership, begetting, and germline information. In Burley, J. & Harris, J. (Eds.), A Companion to Genethics (pp. 317–324). Blackwell.Google Scholar
Swain, J. & French, S. (2000). Towards an affirmation model of disability. Disability & Society, 15(4), 569–582.CrossRefGoogle Scholar
Tiihonen, J., Rautiainen, M-R, Ollila, H. M., Repo-Tiihonen, E., Virkkunen, M., Palotie, A., Pietiläinen, O., Kristiansson, K., Joukamaa, M., Lauerma, H., Saarela, J., Tyni, S., Vartiainen, H., Paananen, J., Goldman, D., & Paunio, T. (2015). Genetic background of extreme violent behavior. Molecular Psychiatry, 20(6), 786–792.CrossRefGoogle ScholarPubMed
United Nations, Department of Economic and Social Affairs, Population Division. (2011). World population prospects: The 2010 revision, highlights and advance tables (Working Paper No. ESA/P/WP.220).Google Scholar
Valentini, L. (2009). On the apparent paradox of ideal theory. Journal of Political Philosophy, 17(3), 332–355.CrossRefGoogle Scholar
Venter, C., Adams, M. D., Myers, E. W., Li, P. W., Mural, R. J., Sutton, G. G., Smith, H. O., Yandell, M., Evans, C. A., Holt, R. A., Gocayne, J. D., Amanatides, P., Ballew, R. M., Huson, D. H., Wortman, J. R., Zhang, Q., Kodira, C. D., Zheng, X. H., Chen, L., … & Xiaonong, Z. (2001). The sequence of the human genome. Science, 291(5507), 1304–1351.CrossRefGoogle ScholarPubMed
Vogeli, C., Shields, A., Lee, T. A., Gibson, T. B., Marder, W. D., Weiss, K. B., & Blumenthal, D. (2007). Multiple chronic conditions: Prevalence, health consequences, and implications for quality, care management, and costs. Journal of General Internal Medicine, 22(3), 391–395.CrossRefGoogle Scholar
Walters, L., & Palmer, J. (1997). The ethics of human gene therapy. Oxford University Press.Google Scholar
Watanabe, T., Watanabe, S., Shinya, K., Kim, J. H., Hatta, M., & Kawaoka, Y. (2008). Viral RNA polymerase complex promotes optimal growth of 1918 virus in the lower respiratory tract of ferrets. Proceedings of the National Academy of Sciences, 106(2), 587–591.Google ScholarPubMed
Watson, J., & Crick, F. (1953). Molecular structure of nucleic acids: A structure for deoxyribose nucleic acid. Nature, 171(4356), 737–738.CrossRefGoogle ScholarPubMed
Weinhold, B. (2006). Epigenetics and the science of change. Environmental Health Perspectives, 114(3), A160–A167.CrossRefGoogle ScholarPubMed
Weon, B. M., & Je, J. H. (2009). Theoretical estimation of maximum human lifespan. Biogerontology, 10(1), 65–71.CrossRefGoogle ScholarPubMed
Wilkinson, S. (2008). “Eugenics talk” and the language of bioethics. Journal of Medical Ethics, 34(6), 467–471.CrossRefGoogle ScholarPubMed
World Health Organization. (2002). Towards a common language for functioning, disability and health. Retrieved January 27, 2021, from https://www.who.int/classifications/icf/icfbeginnersguide.pdfGoogle Scholar
World Health Organization. (2020a, November 12). Genomics. https://www.who.int/news-room/q-a-detail/genomicsGoogle Scholar
World Health Organization. (2020b). Global health estimates: Life expectancy and leading causes of death and disability. Retrieved October 10, 2020, from https://www.who.int/data/gho/data/themes/mortality-and-global-health-estimatesGoogle Scholar
Zhang, L., Zhong, P., Zhai, X., Shao, Y., Lu, S., on behalf of 149 signatories. (2018). Open letter from Chinese HIV professionals on human genome editing. The Lancet, 393(10166), 26–27.CrossRefGoogle ScholarPubMed