Abstract
We are at the cusp of a new revolution shifting from natural to artificial evolution. Recent breakthroughs in genetic engineering opened up a world of new opportunities. The CRISPR-Cas9 gene-editing method allows high-precision cutting and editing of genetic information in the DNA of any living organism, including humans. We have used technology to master nature – now we are about to use technology to change human nature, that has both individual as well as intergenerational applications.
The need for a new regulatory framework is evident. Existing human rights treaties – including biomedical treaties – do not give clear guidance. They were meant to prohibit and control certain things happening to humans but not to deal with humans becoming potentially superhumans or even nonhumans.
Any new policy conversation and the eventual regulatory regime must be based on the voices of those most directly concerned. Persons with disabilities are among the first to be directly concerned. This chapter explores the basics of the genetic revolution, the crucial ethical implications, and the impact on the rights and dignity of persons with disabilities.
European Union’s Horizon 2020 research and innovation programme under the Marie Sklodowska-Curie grant Agreement No 801538
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Notes
- 1.
Doudna and Sternberg (2018). op. cit.
- 2.
Metzel (2019). op. cit.
- 3.
Kozubek (2018). op. cit.
- 4.
“With DNA, as with words, the sequence carries the meaning, Dissolve DNA into its constituent bases, and it turns into a primordial four-letter alphabet soup.” Mukherjee (2017). op. cit.
- 5.
Idem.
- 6.
Idem.
- 7.
Noninvasive prenatal tests (NIPT) can screen for trisomy 21 (Down syndrome) and other chromosomal abnormalities – as well as the sex of the baby – as early as 9 weeks of pregnancy, and with a high degree of accuracy. A few examples available in the market: MaterniT® 21 PLUS, screens for common trisomies (such as trisomy 21, Down syndrome), and can be customized to screen for more conditions (e.g., DiGeorge syndrome); MaterniT® GENOME reports on every chromosome; NACE® Noninvasive prenatal test.
- 8.
These tests have been able to reveal the presence of several chromosomal abnormalities such as trisomy 21 (Down syndrome), as well as Turner’s syndrome, sickle cell anemia, and cystic fibrosis.
- 9.
See: Unnatural Selection. (2019). Documentary, Directed by Egender, J. and Kaufman, L. https://www.imdb.com/title/tt11063952/?ref_=fn_al_tt_1; Explained, S01E02 “Designer DNA.” (2018). Documentary, Written by Fong, J. and Gordon, C. https://www.imdb.com/title/tt8453098/?ref_=ttep_ep2; Human Nature. (2019). Documentary, Directed by Bolt, A. https://www.imdb.com/title/tt9612680/?ref_=nv_sr_srsg_2
- 10.
- 11.
Bioethics and the case law of the Court. (2012). Research Report, Council of Europe/European Court of Human Rights. Available for downloading at www.echr.coe.int
- 12.
- 13.
The phrase “convergent technologies” refers to the synergistic combination of four major “NBIC” (nano-bio-info-cogno) provinces of science and technology, each of which is currently progressing at a rapid rate: (a) nanoscience and nanotechnology; (b) biotechnology and biomedicine, including genetic engineering; (c) information technology, including advanced computing and communications; (d) cognitive science, including cognitive neuroscience. Roco and Bainbridge (2002).
- 14.
Emerging Technologies and Human Rights, International Conference organized by the Committee on Bioethics (DH-BIO) of the Council of Europe under the auspices of the Belgian Chairmanship of the Committee of Ministers, 4–5 May 2015, Room 1, Palais de l’Europe, Strasbourg. Available at: https://www.coe.int/en/web/bioethics/emerging-technologies#{%2211067078%22:[1]}
- 15.
Van Est et al. (2014). op. cit.
- 16.
- 17.
The Universal Declaration on the Human Genome and Human Rights was adopted unanimously and by acclamation at UNESCO’s 29th General Conference on 11 November 1997. The following year, the United Nations General Assembly endorsed the Declaration.
- 18.
On Human Gene Editing: International Summit Statement, December 3, 2015. http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=12032015a
- 19.
DH-BIO/INF (2015) 13, FINAL, Council of Europe, Strasbourg, 2 December 2015.
- 20.
- 21.
- 22.
- 23.
- 24.
Benston (2016). op. cit. p. 3.
- 25.
Benston (2016). op. cit. p. 8.
- 26.
Wolbring and Diep (2016). op. cit, pp. 14–16.
- 27.
- 28.
As indicated above, CRISPR gene-editing method can be used to edit and correct genetic traits in both germline and somatic cells. Germline intervention is carried out in the embryonic stage, while somatic intervention can be carried out in the body or a living person, for example, by gene-therapy. For the purpose of this chapter, somatic intervention will not be addressed.
- 29.
Metzel predicts that IVF will soon be adopted by the mainstream, surpassing sex as humanity’s primary method of reproduction by around 2045. Metzel (2019). op. cit.
- 30.
This has direct implications in relation to existing laws dealing with interruption of pregnancy. While practice differ considerably from country to country, it appears like legislations are more restrictive in allowing discarding embryos gestating in a mother’s womb than discarding embryos fertilized in vitro. Jurisdictions allowing the interruption of pregnancy within the first trimester actually do no distinguish between prenatal and preimplantation testing.
- 31.
This concept has evolved in recent legislations recognizing the right of the woman to interrupt pregnancy. After the first trimester, interruption is also allowed when “the fetus carries a congenital disorder incompatible with extra uterine life.” E.g., Chilean Law 21.030 of 2017; Spanish Organic Law 2/2010.
- 32.
- 33.
The Online Mendelian Inheritance in Man (OMIM) is an Online Catalog of Human Genes and Genetic Disorders containing information on all known Mendelian disorders and over 15,000 genes. OMIM focuses on the relationship between phenotype and genotype. https://www.omim.org/
- 34.
Dawkins notes that when a biologist says something like, “the fruit fly has the red-eye gene,” what they really mean is that the fly with this gene is more likely to have red eyes. Dawkins (2016).
- 35.
Paragraph e) Convention on the Rights of Persons with Disabilities (CRPD).
- 36.
It should be noted that in the past Down syndrome was considered as a serious disease decreasing life expectancy up to 30 years and the presence of other chronic diseases like heart failure. However, advancement in medicine together with the inclusive paradigm shift of the social model has allowed to improve significantly the health and life of persons with Down syndrome.
- 37.
“Social undesirable” is used here as a way to think on human traits that we would not hesitate to consider as negative. This does not affect the rights and dignity of persons who actually experience an undesirable genetic disease, like cancer, or Alzheimer’s. As Rebecca Cokley stresses out “there is still much desire to put those rendered undesirable in our place.” Cokley R (2017). Please do not edit me out. The Washington Post. August 10, 2017. https://www.washingtonpost.com/opinions/if-we-start-editing-genes-people-like-me-might-not-exist/2017/08/10/e9adf206-7d27-11e7-a669-b400c5c7e1cc_story.html
- 38.
It should be noted, however, the most dominant view is that human rights protection starts at birth, and therefore, we would be here under a nonruled territory.
- 39.
Down syndrome in Iceland virtually disappearing, European Down Syndrome Association (EDSA), http://www.edsa.eu/down-syndrome-in-iceland-virtually-disappearing/
- 40.
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CONEX-Plus Postdoctoral Fellow – University Carlos III of Madrid. https://orcid.org/0000-0002-3635-931X. The author acknowledges support from the CONEX-Plus program funded by Universidad Carlos III de Madrid and the European Union’s Horizon 2020 research and innovation program under the Marie Sklodowska-Curie grant agreement No. 801538.
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Bariffi, F.J. (2022). Genetic Engineering and Disability: Ethical Dilemmas in the Verge of Artificial Evolution. In: Rioux, M.H., Viera, J., Buettgen, A., Zubrow, E. (eds) Handbook of Disability. Springer, Singapore. https://doi.org/10.1007/978-981-16-1278-7_38-1
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