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Personalizing Privacy? Examining the Shifting Boundaries of a Fundamental Right in Preimplantation Genetic Testing of Embryos

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Personalized Medicine in Healthcare Systems

Part of the book series: Europeanization and Globalization ((EAG,volume 5))

Abstract

This paper provides a comparative overview of the relationship between privacy and preimplantation genetic testing in the United States and select European jurisdictions. It aims to describe the legal means used to mediate the technological developments in question and the requirements of privacy as a core fundamental right. Other than the substantive aspects of this mediation, the paper deals with institutions that structure the process.

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Notes

  1. 1.

    See, for instance, Swan (2009), pp. 492–525.

  2. 2.

    It is currently possible to identify over 170 disorders. (Hershberger et al. 2011, str. 38.)

  3. 3.

    See the criteria for determining the meaning of “personalized medicine” in Schleidgen et al. (2015), p. 19.

  4. 4.

    As far as the Council of Europe is concerned, any such intervention on the human genome is currently prohibited by Article 12 of the Convention of the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (Oviedo Convention), ETS No. 164.

  5. 5.

    Solove (2008), p. 87.

  6. 6.

    Post (2010), p. 1333.

  7. 7.

    Sándor (2002), p. 117.

  8. 8.

    Franklin (1996), p. 327.

  9. 9.

    Sándor (2012), p. 1151.

  10. 10.

    Robertson (2003), pp. 467–468; Ethics Committee of the American Society for Reproductive Medicine (2013), pp. 54–57.

  11. 11.

    For a more extensive discussion on the topic, see Smith (2015).

  12. 12.

    Pennings (2004), p. 268. Normally the choice of the child’s sex is allowed only if the embryos carry a gene with an inheritable condition more likely to affect one sex than the other.

  13. 13.

    Lee (2016), pp. 1–7. Implanting an embryo that would develop into a child with a disability also raises the matter of the so-called wrongful births. Cf. King (2008), pp. 377–395.

  14. 14.

    It is for this reason questionable to claim that social sex selection is merely an extension of the right to have a genetically related child. (Fovargue and Bennett 2016, p. 12) Sex of the embryo can normally be selected only if there is a threat that the child might inherit.

  15. 15.

    Knoppers et al. (2006), p. 209.

  16. 16.

    Sándor (2012), p. 1160.

  17. 17.

    Warren (1890), p. 196.

  18. 18.

    Skinner v. Oklahoma ex rel. Williamson, 316 US 535 (1942).

  19. 19.

    Griswold v. Connecticut, 381 U.S. 479 (1965).

  20. 20.

    Hershkoff (2011), p. 480.

  21. 21.

    Paonessa (2007), pp. 353–355.

  22. 22.

    Storrow (2015), p. 340.

  23. 23.

    Ibid., p. 343.

  24. 24.

    Baruch (2008), p. 257.

  25. 25.

    Damiano (2011), p. 854.

  26. 26.

    Loc. cit.

  27. 27.

    Robertson (2008), p. 1496.

  28. 28.

    Sándor (2002), p. 123.

  29. 29.

    Karpin (2007), available at http://ssrn.com/abstract=112014, pp. 89–102.

  30. 30.

    Grounds for providing for the procedure solely for reasons of health can be found in the Oviedo Convention. Other than prohibiting the procedure for sex-based embryo selection only in cases that involve a “serious hereditary sex-related disease” (Article 14), the Convention also provides for predictive genetic testing solely for health-related reasons. However, this prohibition arguably leaves some leeway for member states to determine whether preimplantation genetic testing is to be considered a form of “predictive genetic testing”. (Duggan and Quinn 2014, p. 46).

  31. 31.

    Article 4(1) of the Law on Medically Assisted Reproduction, Official Gazette Nr. 86/12 (hereinafter: Law on Medically Assisted Reproduction).

  32. 32.

    Article 4(2) and (3) of the Law on Medically Assisted Reproduction.

  33. 33.

    Article 27(2) of the Law on Medically Assisted Reproduction.

  34. 34.

    Article 27(3) of the Law on Medically Assisted Reproduction.

  35. 35.

    In Article 3(1), the Spanish Ley 14/2006, de 26 de mayo, sobre técnicas de reproducción humana asistida (BOE núm. 126 de 27 de Mayo de 2006). For a broader overview of various European jurisdictions, see the report on the legal state of the art in Council of Europe Member States. (Background document on preimplantation and prenatal genetic testing, DH-BIO/INF (2015) 6, pp. 17–20.

  36. 36.

    Barak (2015), p. 157.

  37. 37.

    Cepeda Espinosa (2012), p. 969. See also Schoeman (1992), p. 13.

  38. 38.

    Pretty v. United Kingdom (Application number 2346/02), para 61.

  39. 39.

    Foster (2011), p. 124.

  40. 40.

    Hämäläinen v. Finland (Application no. 37359/09).

  41. 41.

    Pretty v. United Kingdom (Application no. 2346/02); Y. Y. v. Turkey (Application no. 14793/08).

  42. 42.

    Tysiąc v. Poland (Application no. 5410/03); R.R. v. Poland (Application no. 27617/04).

  43. 43.

    S. H. and Others v. Austria (Application no. 57813/00); Evans v. the United Kingdom (Application no. 6339/05). This category also includes cases where privacy is violated by an authorised presence of third persons in the delivery room. Konovalova v. Russia (Application no. 37873/04).

  44. 44.

    See, for example, L.H. v. Latvia (Application no. 52019/07); S. and Marper v. the United Kingdom (Application nos. 30562/04 and 30566/04); M.K. v. France (Application no. 19522/09); Dagregorio and Mosconi v. France (Application no. 65714/11); Aycaguer v. France (Application No. 8806/12). The last two cases are currently pending before the ECtHR.

  45. 45.

    Vilnes and Others v. Norway (Application no. 52806/09).

  46. 46.

    See Parillo v. Italy (Application no. 46470/11) (finding that decisions on one’s genetic material represent “an intimate aspect of one’s “personal life””).

  47. 47.

    Application no. 54270/10. See Puppinck (2013), pp. 152–177.

  48. 48.

    Article 12(1)(a) of the Ley 14/2006, de 26 de mayo, sobre técnicas de reproducción humana asistida, provides that the condition must be one of an “early onset” and that it must not be treatable “in line with medical achievements of the day”.

  49. 49.

    Knoppers, B. M., Rosario, I. M., op. cit., p. 2697.

  50. 50.

    It could thus be argued that they participate in “knowledge production” that gravitates around preimplantation genetic testing. On knowledge politics, see Demény (2010), pp. 19–37.

  51. 51.

    The Warnock Report, which recommended that a regulator be introduced, similarly points out the importance of expert regulation that is not ignorant of the context in which it operates. (Department of Health and Social Security, Report of the Committee of Inquiry into Human Fertilisation and Embryology, July 1984, para 13.2.).

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Authors and Affiliations

  1. Faculty of Law, University of Rijeka, Rijeka, Croatia

    Matija Miloš

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  1. Matija Miloš
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  1. Faculty of Law, University of Rijeka, Rijeka, Croatia

    Nada Bodiroga-Vukobrat

  2. Croatian Academy of Sciences and Arts, Rijeka, Croatia

    Daniel Rukavina

  3. Juraj Dobrila University of Pula, Faculty of Medicine, Pula, Croatia

    Krešimir Pavelić

  4. Department of Biotechnology, Centre for High-Throughput Technologies, University of Rijeka, Rijeka, Croatia

    Krešimir Pavelić

  5. University of Applied Sciences, Ludwigsburg, Germany

    Gerald G. Sander

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Miloš, M. (2019). Personalizing Privacy? Examining the Shifting Boundaries of a Fundamental Right in Preimplantation Genetic Testing of Embryos. In: Bodiroga-Vukobrat, N., Rukavina, D., Pavelić, K., Sander, G.G. (eds) Personalized Medicine in Healthcare Systems. Europeanization and Globalization, vol 5. Springer, Cham. https://doi.org/10.1007/978-3-030-16465-2_16

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