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Being Born in the Era of Genomics

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From Measuring Rods to DNA Sequencing

Part of the book series: Health, Technology and Society ((HTE))

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Abstract

With recent advances in germline editing, the data produced by genomics is on the verge of transforming human reproduction and the decisions that affect it. The chapter shows the new view of birth, personhood and the resulting parental responsibility. Marked by the omnipresence of genetic measurement, birth is apprehended in terms of probabilistic prediction, while the genome appears as the infrastructure of the person which, once deciphered, will make it possible to anticipate individual destinies summarized in a series of probabilities. Finally, a set of normative considerations, promoted by an influential bioethics literature, is added to this, drawing the portrait of the “good parent” who has the duty to make a genetic selection in the interest of the unborn child.

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Notes

  1. 1.

    Figures provided by INED (De La Rochebrochard 2018, https://doi.org/10.3917/popsoc.556.0001).

  2. 2.

    The sequencing process usually analyzes the exome, that is, the coding portion, which amounts for an estimated 1% of the genome. The sequencing of a fetus’s full exome is less common.

  3. 3.

    In French, this operation is also referred to as “targeted modifications of the genome”.

  4. 4.

    The British news site Bionews (https://www.bionews.org.uk/) is the main source of information. It is published by the Progress Educational Trust (PET), an organization which is presented as independent and promoting informed debate on research in biology. Time milestones (from 2015 to January 2019) correspond to the first clinical applications of genome editing on human embryos (2015) until the first birth of babies whose genome was modified (November 2018).

  5. 5.

    Only a single birth resulting from this process has been reported to this day—see further.

  6. 6.

    Non-invasive prenatal testing for trisomy 21 is considered very reliable.

  7. 7.

    Measurement of nuchal translucency and sampling of maternal serum markers.

  8. 8.

    A karyotype of the embryo’s chromosomes is obtained via amniocentesis.

  9. 9.

    This screening analyzes circulating cell-free fetal DNA, which is present in maternal serum from the fifth week of amenorrhea. The tests are carried out from the tenth week of amenorrhea, when the proportion of fetal DNA is deemed sufficient to be analyzed. The sequencing is performed exclusively on circulating cell-free fetal DNA.

  10. 10.

    In France, the use of the preimplantation genetic diagnosis (PGD) is strictly controlled and remains exceptional (under 600 PGDs per year). It is restricted to cases where at least one of the parents has a “severe and incurable” genetic condition. A collective of doctors recommends providing wider access to “the genetic screening of the embryo”, as is the case in other European countries (Frydman 2017).

  11. 11.

    The relative risk is the relation between two probabilities: the ratio of the probability of being affected by a given pathology associated with the observed mutation (e.g. 10%) to the probability of this pathology occurring in a reference population (e.g. 25%). A high relative risk can be low in absolute value if the probability in the denominator is very low (e.g. 10:0.25=40). See Jordan (2000).

  12. 12.

    For example, the presence of a given condition, for which associated genetic variations are identified in comparison with a sample of healthy individuals.

  13. 13.

    According to Martin (2011), “probability does not refer to an observable and controllable existence; rather, it signifies a possible existence”. A “possible existence” is an abstract notion that can be difficult to grasp from a cognitive standpoint.

  14. 14.

    The germinal genome is the genome of reproductive cells (gametes, early-stage embryos).

  15. 15.

    Interviews with medical teams and female patients, observations performed in medical practices in the three countries (Vassy et al. 2014).

  16. 16.

    Ruling of 1 December 2018 setting good practice guidelines in terms of prenatal screening and diagnosis; ruling of 19 April 2018 by the National Union of Health Insurance bodies published on 27 December 2018.

  17. 17.

    “Genetic texts … are also moral tests”: Mukherjee (2016: 438) quotes an oral comment by genetician Eric Topol.

  18. 18.

    On this point, see Testart (2014) and Mukherjee (2016).

  19. 19.

    The notion of “reproductive freedom” is key in the discourses of the philosophers and ethicists who support the expansion of prenatal selection from a normative perspective.

  20. 20.

    Moral pluralism refers here to diversification and divergence between standards of what is good and fair in liberal tradition societies.

  21. 21.

    “Why human gene editing must not be stopped”, The Guardian, 2 December 2015. https://www.theguardian.com/science/2015/dec/02/why-human-gene-editing-must-not-be-stopped.

    Harris supported these arguments as early as 2007 in Enhancing evolution. The ethical case for making better people.

  22. 22.

    And many others in their wake: see, for instance, Christopher Gyngell and Russell Blackford in Australia, Ronald M. Green, Steven Pinker or Silvia Camporesi in North America. These authors adopt a utilitarian perspective to support the moral imperative of prenatal choice (Camporesi uses the term eligogenics, from the Latin eligere for choosing, sorting) seen as the parent’s duty. In France, Laurent Alexandre expresses a similar point of view in “Distorsion morale sur la correction du génome”, Le Monde, 20 May 2015.

  23. 23.

    This argument is also presenting in discourses advocating in favor of prenatal selection: see, for example, Blackford (2014) and Camporesi (2014).

  24. 24.

    This service is offered by the Manhattan Cryobank. http://www.manhattancryobank.com/.

  25. 25.

    In Japan and the United States, a test screening for a broad spectrum of pathologies and calculating the future parents’ degree of genetic compatibility is available on the market (the-japan-news.com, 21 May 2017: “New services to predict genetic disorders in children”). In Belgium, in a March 2017 ruling, the Superior Council of Health recommended to offer free pre-conception tests to all future parents who have undergone a fertility treatment or are diagnosed as carriers of a recessive genetic condition. https://health.belgium.be/fr/avis-9240-depistage-genetique.

  26. 26.

    This sensationalist expression used by the media was rejected by many geneticists.

  27. 27.

    https://www.bionews.org.uk/page_140038.

  28. 28.

    On CRISPR-Cas9, see Tremblay (2015).

  29. 29.

    https://www.bionews.org.uk/page_143364.

  30. 30.

    https://www.sciencemag.org/news/2019/06/russian-geneticist-answers-challenges-his-plan-make-gene-edited-babies.

  31. 31.

    A total of 61 reports or statements on germline editing from about 50 countries or organizations were found for the period 2015–2018 (Brokowski 2018).

  32. 32.

    Le Monde, 28 November 2018.

  33. 33.

    http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=11282018b.

  34. 34.

    Based on the genomic data he has had access to, geneticist Sean P. Ryder refutes that He Jiankui could have provoked the CCR5∆32 mutation in the twins because of the evidence of an off-target and mosaic effect (Ryder 2018).

  35. 35.

    Savulescu and his team support a similar position: they believe that germline editing can be justified morally if a monogenic mutation with a “catastrophic” effect is detected in an embryo (Savulescu quotes the example of the Tay-Sachs disease). This is not the case with the editing performed on the Chinese twins, which is for this reason considered nonethical (Savulescu and Singer 2019; Gyngell et al. 2019).

  36. 36.

    http://nationalacademies.org/cs/groups/genesite/documents/webpage/gene_177260.pdf.

  37. 37.

    http://nuffieldbioethics.org/wp-content/uploads/Genome-editing-and-human-reproduction-FINAL-website.pdf.

  38. 38.

    https://www.ethikrat.org/en/press-releases/2019/ethics-council-germline-interventions-currently-too-risky-but-not-ethically-out-of-the-question/.

  39. 39.

    In Europe, this opinion is also that of ARRIGE (Association for Responsible Research and Innovation in Genome Editing) (Montoliu et al. 2018).

  40. 40.

    The problem had already been mentioned by Jürgen Habermas in the early 2000s before genome editing was perfected, in Future of Human Nature (2003 [2001]).

  41. 41.

    The argument of inequality is key according to Marcy Darnovsky, director of the Center for Genetics and Society, which opposes the opinions of NAS in the United States or NCB in the United Kingdom. Her multiple publications include: “Genetically modifying future children isn’t just wrong. It would harm all of us”, The Guardian, 17 July 2018. https://www.theguardian.com/commentisfree/2018/jul/17/genetically-modifying-future-children-embryos-nuffield-council-bioethics.

  42. 42.

    This is the opinion of French doctor and ethicist Axel Khan on the birth of the Chinese twins: “The aim is not to eradicate diseases: in this case, this is about creating augmented men or women” (atlantico.fr, 27 November 2018).

  43. 43.

    On this question, see Morange (2017) and Mukherjee (2016).

  44. 44.

    These words can be found in Article 1 of the UNESCO’s Universal Declaration on the Genome and Human Rights (1997). It was reasserted in October 2015 in the report of this body’s International Committee on Bioethics. https://unesdoc.unesco.org/ark:/48223/pf0000233258.

  45. 45.

    See recent statements on this topic by philosopher Françoise Baylis (2019) and geneticist J. Benjamin Hurlbut in an opinion column in Nature, 10 January 2019. https://www.nature.com/articles/d41586-018-07881-1.

  46. 46.

    Based on the Oviedo Convention (1997), the Parliamentary Assembly of the Council of Europe voted a recommendation on 12 October 2017, stating that “deliberate germ-line editing in human beings would cross a line viewed as ethically inviolable”. http://assembly.coe.int/nw/xml/XRef/Xref-XML2HTML-EN.asp?fileid=24228&lang=en.

  47. 47.

    The spectrum of ideological orientations is broad: for example, in the United States, the Center for Genetics and Society claims to adhere to secular humanism; in France, Alliance Vita and the Jérôme Lejeune Foundation (which publish information website Généthique), both are Catholic-leaning pro-life associations.

  48. 48.

    This point confirms the conclusions of Anne-Sophie Giraud (2014) on representations of the embryo in medically assisted reproduction.

  49. 49.

    This new approach is based on “stochastic gene expression”: the notion of a genetic program that could reveal the “secrets of life” is dismissed as a “legend of genes” (Lambert 2006). The role played by the genes is not negated but relativized, and re-situated within a network of interactions that go beyond the unilateral gene-cell relation (Kupiec et al. 2011).

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  1. Centre Max Weber, Université de Lyon, Lyon, France

    Jean-Hugues Déchaux

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  1. Laboratoire Lorrain de Sciences Sociales, Université de Lorraine, Nancy, France

    Ingrid Voléry

  2. Laboratoire Lorrain de Sciences Sociales, Université de Lorraine, Nancy, France

    Marie-Pierre Julien

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Déchaux, JH. (2020). Being Born in the Era of Genomics. In: Voléry, I., Julien, MP. (eds) From Measuring Rods to DNA Sequencing. Health, Technology and Society. Palgrave Macmillan, Singapore. https://doi.org/10.1007/978-981-15-7582-2_5

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