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.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Notes
- 1.
See, for instance, Swan (2009), pp. 492–525.
- 2.
It is currently possible to identify over 170 disorders. (Hershberger et al. 2011, str. 38.)
- 3.
See the criteria for determining the meaning of “personalized medicine” in Schleidgen et al. (2015), p. 19.
- 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.
Solove (2008), p. 87.
- 6.
Post (2010), p. 1333.
- 7.
Sándor (2002), p. 117.
- 8.
Franklin (1996), p. 327.
- 9.
Sándor (2012), p. 1151.
- 10.
- 11.
For a more extensive discussion on the topic, see Smith (2015).
- 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.
- 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.
Knoppers et al. (2006), p. 209.
- 16.
Sándor (2012), p. 1160.
- 17.
Warren (1890), p. 196.
- 18.
Skinner v. Oklahoma ex rel. Williamson, 316 US 535 (1942).
- 19.
Griswold v. Connecticut, 381 U.S. 479 (1965).
- 20.
Hershkoff (2011), p. 480.
- 21.
Paonessa (2007), pp. 353–355.
- 22.
Storrow (2015), p. 340.
- 23.
Ibid., p. 343.
- 24.
Baruch (2008), p. 257.
- 25.
Damiano (2011), p. 854.
- 26.
Loc. cit.
- 27.
Robertson (2008), p. 1496.
- 28.
Sándor (2002), p. 123.
- 29.
Karpin (2007), available at http://ssrn.com/abstract=112014, pp. 89–102.
- 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.
Article 4(1) of the Law on Medically Assisted Reproduction, Official Gazette Nr. 86/12 (hereinafter: Law on Medically Assisted Reproduction).
- 32.
Article 4(2) and (3) of the Law on Medically Assisted Reproduction.
- 33.
Article 27(2) of the Law on Medically Assisted Reproduction.
- 34.
Article 27(3) of the Law on Medically Assisted Reproduction.
- 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.
Barak (2015), p. 157.
- 37.
- 38.
Pretty v. United Kingdom (Application number 2346/02), para 61.
- 39.
Foster (2011), p. 124.
- 40.
Hämäläinen v. Finland (Application no. 37359/09).
- 41.
Pretty v. United Kingdom (Application no. 2346/02); Y. Y. v. Turkey (Application no. 14793/08).
- 42.
Tysiąc v. Poland (Application no. 5410/03); R.R. v. Poland (Application no. 27617/04).
- 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.
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.
Vilnes and Others v. Norway (Application no. 52806/09).
- 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.
Application no. 54270/10. See Puppinck (2013), pp. 152–177.
- 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.
Knoppers, B. M., Rosario, I. M., op. cit., p. 2697.
- 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.
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.).
References
Aycaguer v. France (Application No. 8806/12)
Barak A (2015) Human dignity: the constitutional value and the constitutional right. Cambridge University Press, Cambridge
Baruch S (2008) Preimplantation genetic diagnosis and parental preferences: beyond deadly diseases. Houston J Health Law Policy 8:245–270
Cepeda Espinosa MJ (2012) Privacy, published in the Oxford handbook of comparative constitutional law. Oxford University Press, Oxford, pp 966–981
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
Costa and Pavan v. Italy (Application no. 54270/10)
Council of Europe, Background document on preimplantation and prenatal genetic testing, DH-BIO/INF (2015) 6, Available at http://bit.ly/2ogSIto. Last accessed on 9 Apr 2017
Dagregorio and Mosconi v. France (Application no. 65714/11)
Damiano L (2011) When parents can choose to have the “perfect” child: why fertility clinics should be required to report preimplantation genetic diagnosis dana? Family Court Rev 49:846–855
Demény E (2010) Universal values contextualization and bioethics: knowledge production in the age of genetics. Ann Dep Soc Sci Med Humanit 1(1):19–37
Department of Health and Social Security, Report of the Committee of Inquiry into Human Fertilisation and Embryology, July 1984., Available at: http://bit.ly/1F7a0L6. Last accessed on 9 Apr 2017
Duggan M, Quinn E (2014) Creating a legal framework for pre-implantation in genetic diagnosis in Ireland – regulation, recommendations and some potential tort law scenarios. Medico-Legal J Ireland 20(1):40–51
Ethics Committee of the American Society for Reproductive Medicine (2013) Use of preimplantation genetic diagnosis for serious adult onset conditions: a committee opinion. Fertil Steril 100(1):54–57
Evans v. the United Kingdom (Application no. 6339/05)
Foster C (2011) Human dignity in bioethics and law. Hart Publishing, Portland
Fovargue S, Bennett R (2016) What role should public opinion play in ethico-legal decision making? The example of selecting sex for non-medical reasons using preimplantation genetic diagnosis. Med Law Rev:34–58
Franklin S (1996) Postmodern procreation: a cultural account of assisted reproduction. In: Ginsburg FD, Rapp R (eds) Conceiving the New World Order: The Global Politics of Reproduction. University of California Press, London
Griswold v. Connecticut, 381 U.S. 479 (1965)
Hämäläinen v. Finland (Application no. 37359/09)
Hershberger PE, Schoenfeld C, Tur-Kaspa I (2011) Unraveling preimplantation genetic diagnosis for high-risk couples: implications for nurses at the front line of care. Nurs Womens Health 15:36–45
Hershkoff H (2011) Horizontality and the “spooky” doctrines of American law. Buffalo Law Rev 59:455–506
Karpin I (2007) Choosing disability: Preimplantation genetic diagnosis and negative enhancement, The University of Sydney Law School, Legal Studies Research Paper No. 08/33, available at http://ssrn.com/abstract=1120142, pp 89–102
King J (2008) Duty to the unborn: a response to Smolensky. Hastings Law J 60:377–395
Knoppers BM, Bordet S, Isasi RM (2006) Preimplantation genetic diagnosis: an overview of socio-ethical and legal considerations. Ann Rev Genomics Hum Genet 7:201–221
Konovalova v. Russia (Application no. 37873/04)
L.H. v. Latvia (Application no. 52019/07)
Law on Medically Assisted Reproduction (Croatia), Official Gazette Nr. 86/12
Lee MJH, Chan B, Clark PA (2016) Deafness and prenatal testing: a study analysis. Internet J Fam Pract 14(1):1–7
Ley 14/2006, de 26 de mayo, sobre técnicas de reproducción humana asistida (Spain) (BOE núm. 126 de 27 de Mayo de 2006)
M.K. v. France (Application no. 19522/09)
Paonessa L (2007) Straightening your heir: On the constitutionality of regulating the sue of preimplantation technologies to select preembryos or modify the genetic profile thereof based on expected sexual orientation. Rutgers Comput Technol Law J 33:331–366
Parillo v. Italy (Application no. 46470/11)
Pennings G (2004) Sex selection, public policy and the HFEA’s role in political decision making – response to Edgar Dahl’s “The presumption in favour of liberty”. Reprod BioMed Online 8(3):268–269
Post R (2010) Theorizing disagreement: reconceiving the relationship between law and politics. Calif Law Rev 98(4):1319–1350
Pretty v. United Kingdom (Application no. 2346/02)
Puppinck G (2013) Costa and Pavan v. Italy and the convergence between human rights and biotechnologies. Commentary on the ECHR decision Costa and Pavan v. Italy, No. 54270/10, 28 August 2012. Quaderni di diritto mercato tecnologia 3(3):152–177
R.R. v. Poland (Application no. 27617/04)
Robertson JA (2003) Extending preimplantation genetic diagnosis: the ethical debate. Ethical issues in new uses of preimplantation genetic diagnosis. Hum Reprod 18(3):465–471
Robertson JA (2008) Assisting reproduction, choosing genes, and the scope of reproductive freedom. George Washington Law Rev 76:1490–1512
S. and Marper v. the United Kingdom (Application nos. 30562/04 and 30566/04)
S. H. and Others v. Austria (Application no. 57813/00)
Sándor J (2002) Reproduction, self, and state. Soc Res 69(1):115–141
Sándor J (2012) Bioethics and basic rights: persons, humans, and boundaries of life. In: Oxford Handbook of Comparative Constitutional Law (Rosenfeld, M., Sajó, A., ur.), pp 1142–1161
Schleidgen S, Klingler C, Bertram T, Rogowski WH, Marckmann G (2015) What is personalized medicine – medicine for the person? Concepts and contextual aspects, published in The Ethics of Personalized Medicine: Critical Perspectives (Vollman, Jochen; Sandow, Verena; Wäscher Sebastian and Schildmann, Jan, ur.). Ashgate, Farnham, pp 9–24
Schoeman FD (1992) Privacy and social freedom. Cambridge University Press, Cambridge
Skinner v. Oklahoma ex rel. Williamson, 316 US 535 (1942)
Smith MK (2015) Saviour siblings and the regulation of assisted reproductivetechnology. Harm, ethics and law. Routledge, New York
Solove DJ (2008) Understanding privacy. Harvard University Press, Cambridge
Storrow RF (2015) Regulatory aspects of embryo testing: am American view. In: Sills ES (ed) Screening the single Euploid Embryo: molecular genetics in reproductive medicine. Springer International Publishing, New York, pp 339–349
Swan M (2009) Examination of health social networks, consumer personalized medicine and quantified self-tracking. Int J Environ Res Public Health 6(2):492–525
Tysiąc v. Poland (Application no. 5410/03)
Vilnes and Others v. Norway (Application no. 52806/09)
Warren SD, Brandeis LD (1890) The right to privacy. Harv Law Rev 4(5):193–220
Y. Y. v. Turkey (Application no. 14793/08)
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2019 Springer Nature Switzerland AG
About this chapter
Cite this chapter
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
Download citation
DOI: https://doi.org/10.1007/978-3-030-16465-2_16
Published:
Publisher Name: Springer, Cham
Print ISBN: 978-3-030-16464-5
Online ISBN: 978-3-030-16465-2
eBook Packages: Law and CriminologyLaw and Criminology (R0)