Abstract
Is the germline gene editing (GEE) of embryos with disabling conditions a moral obligation? According to a recent editorial by F. Broadmann, there are strong reasons to hold the opposite, since “such a focus on the benefit to individual embryos is to overlook the broader societal changes that genome editing will signal, as well as the potential negative impacts on existing persons with genetic conditions”. This paper is aimed at rebuking these arguments by invoking the human dignity principle.
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References
Barter B, Hastings RP, Williams R, Huws JV (2017) Perceptions and discourses relating to genetic testing: interviews with people with down syndrome. J Appl Res Intellect Disabil 30(2):395–406
Boardman F (2019) Human genome editing and the identity politics of genetic disability. J Community Genet. https://doi.org/10.1007/s12687-019-00437-4
Boardman FK, Hale R (2018) How do genetically disabled adults view selective reproduction? Impairment, identity, and genetic screening. Mol Genet Genomic Med 6:941–956
Buchanan A (1996) Choosing who will be disabled: genetic intervention and the morality of inclusion. Soc Philos Policy 13:18–46
Coller BS (2019) Ethics of human genome editing. Annu Rev Med 70:289–305
De Miguel Beriain I (2018) Human dignity and gene editing: using human dignity as an argument against modifying the human genome and germline is a logical fallacy. EMBO Rep e46789
Parens E, Asch A (2003) Disability rights critique of prenatal genetic testing: reflections and recommendations. Ment Retard Dev Disabil Res Rev 9:40–47
Ranisch R (2019) Germline genome editing versus preimplantation genetic diagnosis: is there a case in favour of germline interventions? Bioethics 00:1–10. https://doi.org/10.1111/bioe.12635
Raposo VL (2019) Gene editing, the mystic threat to human dignity. J Bioeth Inq 16(2):249–257
Savulescu J (2002) Deaf lesbians, “designer disability,” and the future of medicine. BMJ 325:771
Savulescu J, Singer P (2019) An ethical pathway for gene editing. Bioethics 32(2):221 CrossRefGoogle Scholar
Savulescu J, Pugh J, Douglas Tm Gyngell C (2015) The moral imperative to continue gene editing research on human embryos. Protein Cell 6(7):476–479
Soniewicka M (2015) Disability and the ethics of selective reproduciton. Bioethics 29:557–563
Taneja P, Pandya A, Foley D, Nicely V, Arnos KS (2004) Attitudes of deaf individuals towards genetic testing. Am J Med Genet 130A:17–21
The Nuffield Council on Bioethics (2018) Genome editing and human reproduction: social and ethical issues. http://nuffieldbioethics.org/project/genome-editinghuman-reproduction. Accessed 13 March 2020
Funding
This study was funded by the Government of the Basque Country, Grant IT-1066-16 and the EU Commission, H2020 SWAFS Programme, PANELFIT Project, research grant number 788039.
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de Miguel Beriain, I. Gene editing and disabled people: a response to Felicity Boardman. J Community Genet 11, 241–243 (2020). https://doi.org/10.1007/s12687-020-00460-w
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DOI: https://doi.org/10.1007/s12687-020-00460-w