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The Principle of Respect for Human Vulnerability and Assisted Reproductive Technologies

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Human Dignity of the Vulnerable in the Age of Rights

Part of the book series: Ius Gentium: Comparative Perspectives on Law and Justice ((IUSGENT,volume 55))

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Abstract

The chapter tackles the assisted reproductive technologies (ARTs), and the incorporation of two controversial procedures to increase the number of individuals who may satisfy their wish to have children: international commercial surrogacy and mitochondrial transfer. Both of them have an important point in common: the high degree of involvement within the reproduction process demanded to a different woman from the woman who will be the legal mother. In international surrogacy, a woman undergoes a baby gestation for another woman in a different country, who will be the legal mother since the baby is born. In mitochondrial transfer, a woman donates her eggs so that her mitochondria may be used to ‘repair’ the egg of another woman who wants to be a mother, but whose mitochondria are harmed and who does not want her baby to receive them because it would cause him/her serious health issues.

Touching upon two paramount biotechnological matters for the time being, such as mitochondrial transfer and the international gestational surrogacy from the principle of human vulnerability perspective, the many risks for the parties involved lead the author to cast doubt on regulating these practices and to advocate for an effective universal prohibition.

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Notes

  1. 1.

    Udo Schuklenk, Willem Landman, “From the editors”, Developing World Bioethics, vol. 5, n. 3, 2005, pp. iii–vi; John R. Williams, “UNESCO’s proposed declaration on bioethics and human rights. A bland compromise”, Developing World Bioethics, vol. 5, n. 3, 2005, pp. 210–215; David Benatar, “The trouble with universal declarations”, Developing World Bioethics, vol. 5, n. 3, 2005, pp. 220–224; C.C. Macpherson, “Global bioethics: did the universal declaration on bioethics and human rights miss the boat?”, Journal of Medical Ethics, vol. 33, n. 10, 2007, pp. 588–590. A response to some of these critics in Roberto Andorno, “Global bioethics at UNESCO: in defence of the Universal Declaration on Bioethics and Human Rights”, Journal of Medical Ethics, vol. 33, n. 3, 2007, pp.150–154; and Henk ten Have, “Criticism of the Universal Declaration”, in: Hector Gros Spiell and Yolanda Gómez Sánchez (eds.), The UNESCOUniversal Declaration on Bioethics and Human Rights, Granada, Comares, 2006, pp. 183–193.

  2. 2.

    Ruth Macklin, “Yet another guideline? The UNESCO draft declaration”, Developing World Bioethics, vol. 5, n. 3, 2005, pp. 244–250.

  3. 3.

    Henk ten Have, “The Principle of Vulnerability in the UNESCO Declaration on Bioethics and Human Rights”, in: Joseph Tham, Alberto García, Gonzalo Miranda (eds.), Religious Perspectives on Human Vulnerability in Bioethics, Dordrecht, Springer, 2014, pp. 15–27.

  4. 4.

    Robin Marantz Henig, Pandora’s Baby: How the First Test Tube Babies Sparked the Reproductive Revolution, New York, Cold Spring Harbor Laboratory Press, 2004, pp. 170–2.

  5. 5.

    Although the first international surrogacy contracts were executed over 20 years ago (those in which the surrogate and the persons who wish to be parents live in different countries) their exponential number has increased in the last years. At this time, the surrogacy phenomenon (domestic or international) has also been subject to increasing interest from the media for several reasons. On the one hand, some celebrities have resorted to this formula (for example, Nicole Kidman or Elton John) to have children. On the other hand, the increasing number of international surrogacies and the conditions in which they are carried out have been subject to controversy, in part due to some scandals resulting in great debates in the public opinion worldwide (for example, the case of an Australian couple who presumably commissioned a surrogate mother in rural Thailand, abandoned a Down syndrome twin and left him with his impoverished mother).

  6. 6.

    Susan L. Crockin, “Growing families in a shrinking world: legal and ethical challenges in cross-border surrogacy”, Reproductive BioMedicine Online, vol. 27, n. 6, 2013, pp. 733–741.

  7. 7.

    H. J. Smeets, “Preventing the transmission of mitochondrial DNA disorders: selecting the good guys or kicking out the bad guys”, Reproductive BioMedicine Online, vol. 27, n. 6, 2013, pp. 599–610.

  8. 8.

    Jonathan W. Knoche, “Health concerns and ethical considerations regarding international surrogacy”, International Journal of Gynecology & Obstetrics, vol. 126, n. 2, 2014, pp. 183–186.

  9. 9.

    European Court of Human Rights, Mennesson v. France (application no. 65192/11), 26 June, 2014 and Labassee v. France, (application no. 65941/11), 26 June, 2014. See also Paradiso and Campanelli v. Italy (application no. 25358/12), 27 January 2015.

  10. 10.

    Shoukhrat Mitalipov et al., “Mitochondrial gene replacement in primate offspring and embryonic stem cells”, Nature, vol. 461, 2009, pp. 367–372.

  11. 11.

    Douglass M. Tumbull et al., “Pronuclear transfer in human embryos to prevent transmission of mitochondrial DNA disease”, Nature, 465, 2010, pp. 82–85.

  12. 12.

    Gretchen Vogel, “Mitochondrial gene therapy passes final U.K. vote”, Science, DOI: 10.1126/science.aaa7899, 24 February, 2015.

  13. 13.

    Parliamentary Assembly of the Council of Europe: Committee on Social Affairs, Health and Sustainable Development, Human rights and ethical issues related to surrogacy (Rapporteur: Ms Petra DE SUTTER), 13 April 2015.

  14. 14.

    Declaration of Helsinki, 35th World Medical Assembly, Venice, Italy, 1983, cited in: George J. Annas and Michael A. Grodin (eds.), The Nazi doctors and the Nuremberg Code. Human rights and experimentation, New York, Oxford University Press, 1992, p. 338.

  15. 15.

    Before the Helsinki Declaration expressly incorporated a reference to the principle of vulnerability, the Belmont Report (1979) on Ethical Principles and Guidelines for the Protection of Human Subjects of Research had already considered this criterion.

  16. 16.

    Robert V. Carlson, Kenneth M. Boyd, David J. Webb, “The revision of the Declaration of Helsinki: past, present and future”, British Journal of Clinical Pharmacology, vol. 57, n. 6, 2004, pp. 710–711; Appendix 3.

  17. 17.

    Council for International Organizations of Medical Sciences (CIOMS) in collaboration with the World Health Organization (WHO), International Ethical Guidelines for Biomedical Research Involving Human Subjects, Geneva, 2002, http://www.cioms.ch/publications/guidelines/guidelines_nov_2002_blurb.htm (accessed on 23 April, 2015).

  18. 18.

    Juhana E. Idanpaan-Heikkila and Sev S. Fluss, “Revised CIOMS International Ethical Guidelines for Biomedical Research”, Journal of Commercial Biotechnology, vol. 10, n. 2, 2003, pp. 140–146.

  19. 19.

    Henk ten Have, “The Principle of Vulnerability in the UNESCO Declaration on Bioethics and Human Rights”, cit., p. 21.

  20. 20.

    Ruth Macklin, “Bioethics, vulnerability and protection”, Bioethics, vol. 17, nn. 5–6, 2003, pp. 479–480.

  21. 21.

    “Individuals whose willingness to volunteer in a clinical trial may be unduly influenced by the expectation, whether justified or not, of benefits associated with participation, or of a retaliatory response from senior members of a hierarchy in case of refusal to participate. Examples are members of a group with a hierarchical structure, such as medical, pharmacy, dental, and nursing students, subordinate hospital and laboratory personnel, employees of the pharmaceutical industry, members of the armed forces, and persons kept in detention. Other vulnerable subjects include patients with incurable diseases, persons in nursing homes, unemployed or impoverished persons, patients in emergency situations, ethnic minority groups, homeless persons, nomads, refugees, minors, and those incapable of giving consent”; The International Conference on Harmonisation Good Clinical Practice (ICH GCP) Guideline (1996), p. 8;http://www.ich.org/fileadmin/Public_Web_Site/ICH_Products/Guidelines/Efficacy/E6/E6_R1_Guideline.pdf (accessed on 2 April, 2015).

  22. 22.

    Michael Kirby, “Human rights and bioethics: the Universal Declaration of Human Rights and the UNESCO Universal Declaration of Bioethics and Human Rights”; Journal of Contemporary Health Law and Policy, vol. 25, n. 2, 2009, p. 330.

  23. 23.

    Gonzalo Miranda, “Vulnerability: How did the principle Come About?”, in: Joseph Tham, Alberto García, Gonzalo Miranda (eds.) Religious Perspectives on Human Vulnerability in Bioethics, Dordrecht, Springer, 2014, pp. 13–14.

  24. 24.

    See footnote n. 1.

  25. 25.

    Ruth Macklin, “Dignity is a useless concept”, British Medical Journal, vol. 327, 2003, pp. 1419–20.

  26. 26.

    In this sense, Aniceto Masferrer, “Taking Human Dignity more Humanely…”, Chap. 10 of this volume.

  27. 27.

    Rabee Toumi, “Globalization and health care: global justice and the role of physicians”, Medicine and Health Care Philosophy, vol. 17, n. 1, 2014, pp. 71–80. For the relationship between human dignity and vulnerability see, Roberto Andorno and Cristiana Baffone, “Human Rights and the Moral Obligation to Alleviate Suffering”, in: Ronald Green and Nathan Palpant (eds.), Suffering and bioethics, New York, Oxford University Press, 2014, pp. 185 ss.; and Paolo Becchi’s and Roberto Franzini Tibaldeo’s chapter in this volume.

  28. 28.

    Alasdair MacIntyre, Dependent Rational Animals. Why human beings need the virtues, Chicago, Open Court Pub Co, 1999, pp. 10 ss.

  29. 29.

    Agomoni Ganguli-Mitra and Nikola Biller-Andorno, “Vulnerability in Health Care and Research Ethics”, in: Ruth Chadwick, Henk ten Have, Eric M. Meslin (eds.), The SAGE Handbook of Health Care Ethics, London, SAGE, 2011, pp. 239–250.

  30. 30.

    Ronald Dworkin, Taking rights seriously, London, Duckworth & Co., 1977, p. 35.

  31. 31.

    Ibidem, p. 42

  32. 32.

    Maria Patrão Neves, “Article 8: Respect for Human Vulnerability and Personal integrity”, Henk ten Have and Michèle S. Jean (eds.), The UNESCO Universal Declaration on Bioethics and Human Rights Background, principles and application, Paris, UNESCO Publishing, 2009, p. 163.

  33. 33.

    “This is the first statement of bioethical principles adopted by governments. It is part of international human rights law, although not legally binding”; Henk ten Have, “The Principle of Vulnerability in the UNESCO Declaration on Bioethics and Human Rights”, cit., p. 22.

  34. 34.

    Paolo Becchi’s and Roberto Franzini Tibaldeo’s chapter in this volume.

  35. 35.

    International Bioethics Committee (UNESCO), Report on the principle of respect for human vulnerability and personal integrity, UNESCO, Paris, 2013.

  36. 36.

    International Bioethics Committee (UNESCO), Report on Consent, UNESCO, Paris, 2008.

  37. 37.

    International Bioethics Committee (UNESCO), Report on Social Responsibility, UNESCO, Paris, 2010.

  38. 38.

    International Bioethics Committee (UNESCO), Report on the principle of respect for human vulnerability and personal integrity, cit., n. 9, p. 13. This statement is partially based on: Peter Kemp and Jacob Dahl Rendtorff, “The Barcelona Declaration. Towards an Integrated Approach to Basic Ethical Principles”, Synthesis Philosophica, vol. 46, n. 2, 2008, p. 240.

  39. 39.

    Maria Patrão Neves, “Article 8: Respect for Human Vulnerability and Personal integrity”, cit., p. 155.

  40. 40.

    Jesús Ballesteros, “Exigencias de la dignidad humana en la Biojurídica”, in: Jesús Ballesteros and Ángela Aparisi (eds.), Biotecnología, dignidad humana y derecho: Bases para un diálogo, Pamplona, EUNSA, pp. 43–77; Roberto Andorno and Cristiana Baffone, “Human Rights and the Moral Obligation to Alleviate Suffering”, cit., p. 182–200; ElenaPulcini, Care of the World. Fear, Responsibility and Justice in the Global Age, Dordrecht, Springer, 2013, pp. 221–252; and Paolo Becchi’s and Roberto Franzini Tibaldeo’s chapter in this volume.

  41. 41.

    Miguel Kottow, “Vulnerabilidad entre derechos humanos y bioética. Relaciones tormentosas, conflictos insolutos”, Revista de la Facultad de Derecho (Pontificia Universidad Católica de Perú), vol. 69, 2012, p. 44

  42. 42.

    Henk Ten Have, “The Principle of Vulnerability in the UNESCO Declaration on Bioethics and Human Rights”, cit., pp. 26–27.

  43. 43.

    Cfr. Vicente Bellver Capella, “Educación en Derechos Humanos. El estado de la cuestión en el Derecho internacional”, Revista de Derechos Humanos, vol. 3, 2012, p. 131.

  44. 44.

    International Bioethics Committee (UNESCO), Report on…, cit., n. 13, p. 14.

  45. 45.

    Cfr. Miguel Kottow, “Vulnerability: what kind of principle is it?”,Medicine, Health Care and Philosophy, vol. 7, 2004, pp. 285–286.

  46. 46.

    Carl H. Coleman, “Vulnerability as a Regulatory Category in Human Subject Research”, Journal of Law, Medicine and Ethics, vol. 37, n. 1, 2012, pp. 16–17.

  47. 47.

    “Vulnerability expresses two basic ideas. (a) It expresses the finitude and fragility of life which, in those capable of autonomy, grounds the possibility and necessity for all morality. (b) Vulnerability is the object of a moral principle requiring care for the vulnerable. The vulnerable are those whose autonomy or dignity or integrity are capable of being threatened. As such all beings who have dignity are protected by this principle. But the principle also specifically requires not merely non interference with the autonomy, dignity or integrity of beings, but also that they receive assistance to enable them to realize their potential. From this premise it follows that there are positive rights to integrity and autonomy which grounds the ideas of solidarity, non-discrimination and community”; The Barcelona Declaration Policy Proposals to the European Commission, November 1998, by Partners in the BIOMED-II Project Basic Ethical Principles in Bioethics and Biolaw;https://www1.umn.edu/humanrts/instree/barcelona.html (accessed on 2 April, 2015)

  48. 48.

    International Bioethics Committee (UNESCO), Report on the principle of respect for human vulnerability and personal integrity, cit., n. 16, p. 15.

  49. 49.

    Ibidem, n. 17, p. 16.

  50. 50.

    Ibidem, n. 20, p. 16.

  51. 51.

    Herman Nys, “Towards an International Treaty on Human Rights and Biomedicine? Some Reflections Inspired by UNESCO’s Universal Declaration on Bioethics and Human Rights”, European Journal of Health Law, vol. 13, 2005, pp. 5–8.

  52. 52.

    Jan Helge Solbakk, “Vulnerability: a futile or useful principle in healthcare ethics?”, Ruth Chadwick, Henk ten Have, Eric M. Meslin (eds.), The SAGE Handbook of Health Care Ethics, cit., p. 229.

  53. 53.

    Hans Jonas, The Imperative of Responsibility: In Search of an Ethics for the Technological Age, Chicago, Chicago University Press, 1984, p. 11. For a thorough enquiry into Jonas’ contribution to the issue of vulnerability, see P. Becchi’s and R. Franzini Tibaldeo’s chapter in this book.

  54. 54.

    See Chap. 11 of this volume.

  55. 55.

    Francoise Baylis, “The ethics of creating children with three genetic parents”, Reproductive Biomedicine (online), vol. 26, n. 6, 2013, pp. 531–534.

  56. 56.

    A. L. Bredenoord, W. Dondorp, G. Pennings, G. De Wert, “Ethics of modifying the mitochondrial genome”, Journal of Medical Ethics, vol. 37, n. 2, 2011, pp. 97–100.

  57. 57.

    Klaus Reinhardt, Damian K. Dowling, Edward H. Morrow, “Mitochondrial Replacement, Evolution, and the Clinic”, Science, vol. 341, 2013, pp. 1345–1346.

  58. 58.

    Michèle Hansen et al., “Assisted reproductive technology and birth defects: a systematic review and meta-analysis”, Human Reproduction Update, 2013, doi:10.1093/humupd/dmt006.

  59. 59.

    The Center for Bioethics and Culture Network, Think Again for a Human Future: A Study Guide on the Legal, Medical, and Ethical Questions of Third Party Reproduction, 2014, http://www.cbc-network.org/ (accessed on 1 May, 2014).

  60. 60.

    Francoise Baylis, “The ethics of creating children with three genetic parents”, cit., pp. 531–534.

  61. 61.

    Evan R. Myers, “Outcomes of Donor Oocyte Cycles in Assisted Reproduction”, JAMA, 2013; doi:10.1001/jama.2013.280925.

  62. 62.

    Jürgen Habermas, The Future of Human Nature, Oxford, Blackwell, 2003, p. 23.

  63. 63.

    Vicente Bellver Capella, “Las intervenciones genéticas en la línea germinal humana y el horizonte de un futuro posthumano”, in: Jesús Ballesteros and Ángela Aparisi (eds.), Biotecnología, dignidad humana y derecho: Bases para un diálogo, Pamplona, EUNSA, pp. 115–148.

  64. 64.

    For all these positions, see: The President’s Council on Bioethics, Human Cloning and Human Dignity: An Ethical Inquiry, Washington D.C., 2002,

    https://bioethicsarchive.georgetown.edu/pcbe/reports/cloningreport/ (accessed on 2 June, 2015).

  65. 65.

    Cyra Akila Choudhury, “The Political Economy and Legal Regulation of Transnational Commercial Surrogate Labor”, Vanderbilt Journal of Transnational Law, Vol. 46, n. 1, 2015, p. 1.

  66. 66.

    Ángela Aparisi and José López Guzmán, “Aproximación a la problemática ética y jurídica de la maternidad subrogada”, Cuadernos de bioética, Vol. 23, n. 2, 2012, pp. 253–268.

  67. 67.

    Jesús Ballesteros, “Identidad personal y técnicas de reproducción asistida”, Anuario de Derechos Humanos, vol. 2, 2001, pp. 137–150.

  68. 68.

    Because of that it has been proposed that surrogacy becomes a profession; Ruth Walker y Liezl van Zyl, “Surrogate Motherhood and Abortion for Fetal Abnormality”, Bioethics (2015), doi:10.1111/bioe.12157, http://onlinelibrary.wiley.com/doi/10.1111/bioe.12157/abstract (accessed on 22 May, 2015).

  69. 69.

    Cyra Akila Choudhury, “The Political Economy and Legal Regulation of Transnational Commercial Surrogate Labor”, cit., p. 4.

  70. 70.

    Alisson M. Jaggar, “Vulnerable Women and Neo-Liberal Globalization: Debt Burdens Undermine Women’s Health in the Global South”, Theoretical Medicine and Bioethics, vol. 23, n. 6, 2002, pp. 424–440.

  71. 71.

    A. Donchin, “Reproductive Tourism and the Quest for Global Gender Justice”, Bioethics, vol. 24, n. 7, 2010, pp. 323–332.

  72. 72.

    Scott Carney, “Inside India’s Rent-a-Womb Business”, Mother Jones, March-April 2010, http://www.motherjones.com/politics/2010/02/surrogacy-tourism-india-nayna-patel (accessed on 22 May, 2015).

  73. 73.

    See the Baby Gammy scandal: Bridie Jabour, “Baby Gammy: conflicting reports about baby boy ‘abandoned’ in Thailand”, The Guardian, 14 August 2015,

    http://www.theguardian.com/world/2014/aug/04/baby-gammy-conflicting-reports-about-baby-boy-abandoned-in-thailand (accessed on 2 June, 2015).

  74. 74.

    Sama-Resource Group for Women and Health, Birthing A Market: A Study on Commercial Surrogacy, New Delhi, 2012, pp. 90 ss.

  75. 75.

    Cyra Akila Choudhury, “The Political Economy and Legal Regulation of Transnational Commercial Surrogate Labor”, cit., pp. 4–62.

  76. 76.

    Todd M. Krim, “Beyond Baby M: International Perspectives on Gestational Surrogacy and the Demise of the Unitary Biological Mother”, Annals of Health Law, vol. 5, n. 1, 1996, pp. 193–228.

  77. 77.

    Janice G. Raymond, Women as wombs: Reproductive Technology and the Battle Over Women’s Freedom, San Francisco, Harper, p. 208.

  78. 78.

    Usha Rengachary Smerdon, “Crossing bodies, crossing borders. International surrogacy between United States and India”, Cumberland Law Review, vol. 39, n. 1, 2008, p. 83.

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Acknowledgement

The author acknowledges the financial support of the Spanish Ministry of Economy and Competitiveness in conducting this research (DER2014-52811-P).

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  1. Faculty of Law, Department of Philosophy of Law, Ethics and Political Philosophy, University of Valencia, Avda. Los Naranjos, 46071, Valencia, Spain

    Vicente Bellver

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  1. Faculty of Law, University of Valencia, Valencia, Spain

    Aniceto Masferrer

  2. Department of Political Sciences, Ethics and Sociology, CEU Cardenal Herrera University, Alfara del Patriarca, Valencia, Spain

    Emilio García-Sánchez

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Bellver, V. (2016). The Principle of Respect for Human Vulnerability and Assisted Reproductive Technologies. In: Masferrer, A., García-Sánchez , E. (eds) Human Dignity of the Vulnerable in the Age of Rights. Ius Gentium: Comparative Perspectives on Law and Justice, vol 55. Springer, Cham. https://doi.org/10.1007/978-3-319-32693-1_14

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