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Mitochondrial Donation and UK Biomedical Politics

  • Rebecca Dimond
  • Neil Stephens
Chapter

Abstract

In 2015 the UK became the first country in the world to legalise mitochondrial donation, a controversial assisted reproductive technology. Across this book, we detail how institutions, activist groups, scientists, parliamentarians, patients and publics engaged in extensive labour to support, justify and legitimise their position within hard fought campaigns. We also consider how the technology was given meaning through policy consultations, reviews and debates. By drawing on a unique dataset of interviews with stakeholders, we argue that the legalisation of mitochondrial donation is the latest iteration of a particular UK sociotechnical imaginary in which embryo research and use is rendered ethical through a permissive but highly scrutinised system. In this first chapter we set out a timeline of the debates, key points of contestation, and our methodological and theoretical contribution.

Keywords

Biomedical politics Mitochondrial donation Three parent babies Sociotechnical imaginaries Enacting ethical futures 

References

  1. Appleby, J. B. (2015). The ethical challenges of the clinical introduction of mitochondrial replacement techniques. Medicine, Health Care and Philosophy, 18(4), 501–514.CrossRefGoogle Scholar
  2. Austin, J. L. (1962). How to do things with words. Oxford: Clarendon Press.Google Scholar
  3. Barad, K. (2007). Meeting the universe halfway: Quantum physics and the entanglement of matter and meaning. Durham, NC: Duke University Press.CrossRefGoogle Scholar
  4. Barritt, J. A., Brenner, C. A., Malter, H. E., & Cohen, J. (2001). Mitochondria in human offspring derived from ooplasmic transplantation. Human Reproduction, 16, 513–516.CrossRefGoogle Scholar
  5. Baylis, F. (2013). The ethics of creating children with three genetic parents. Reproductive Biomedicine Online, 26, 531–534.CrossRefGoogle Scholar
  6. Baylis, F. (2017). Human nuclear genome transfer (so-called mitochondrial replacement): Clearing the underbrush. Bioethics, 31(1), 7–19.CrossRefGoogle Scholar
  7. Bleich, J. D. (2015). Mitochondrial DNA replacement: How many mothers? Tradition, 48, 60–84.Google Scholar
  8. Borup, M., Brown, N., Kondad, K., & van Lente, H. (2006). The sociology of expectations in science and technology. Technology Analysis & Strategic Management, 18(3–4), 285–298.CrossRefGoogle Scholar
  9. Bredenoord, A. L., Dondorp, W., Pennings, G., & De Wert, G. (2011). Ethics of modifying the mitochondrial genome. Journal of Medical Ethics, 37(2), 97–100.CrossRefGoogle Scholar
  10. Bredenoord, A. L., Krumeich, A., De Vries, M. C., Dondorp, W., et al. (2010). Reproductive decision-making in the context of mitochondrial DNA disorders: Views and experiences of professionals. Clinical Genetics, 77(1), 10–17.CrossRefGoogle Scholar
  11. Brosnan, C., & Michael, M. (2014). Enacting the ‘neuro’ in practice: Translational research, adhesion and the promise of porosity. Social Studies of Science, 44(5), 680–700.CrossRefGoogle Scholar
  12. Brown, N., Rappert, B., & Webster, A. (2000). Introducing contested futures: From looking into the future to looking at the future. In N. Brown, B. Rappert, & A. Webster (Eds.), Contested futures: A sociology of prospective science and technology. Aldershot: Ashgate.Google Scholar
  13. Butler, J. (1993). Bodies that matter: On the discursive limits of ‘sex’. London: Routledge.Google Scholar
  14. Castro, R. J. (2016). Mitochondrial replacement therapy: The UK and US regulatory landscapes. Journal of Law and the Biosciences, 3(3), 726–735.Google Scholar
  15. Chen, S. H., Pascale, C., Jackson, M., Szvetecz, M. A., et al. (2016). A limited survey-based uncontrolled follow-up study of children born after ooplasmic transplantation in a single center. Reproductive Biomedicine Online, 33, 737–744.CrossRefGoogle Scholar
  16. Coghlan, A. (2017, January 18). First baby born using 3-parent technique to treat infertility. New Scientist. https://www.newscientist.com/article/2118334-first-baby-born-using-3-parent-technique-to-treat-infertility [accessed 27 Nov 2017].
  17. Cohen, J., & Alikani, M. (2013). The biological basis for defining bi-parental or tri-parental origin of offspring from cytoplasmic and spindle transfer. Reproductive Biomedicine Online, 26(6), 535–537.CrossRefGoogle Scholar
  18. Cohen, J., & Malter, H. (2016). The first clinical nuclear transplantation in China: New information about a case reported to ASRM in 2003. Reproductive Biomedicine Online, 33(4), 433–435.Google Scholar
  19. Cooper, M., & Waldby, C. (2014). Clinical labor: Tissue donors and research subjects in the global bioeconomy. Durham, NC: Duke University Press.CrossRefGoogle Scholar
  20. Craven, L., Herbert, M., Murdoch, A., Murphy, J., et al. (2016). Research into policy: A brief history of mitochondrial donation. Stem Cells, 34(2), 265–267.CrossRefGoogle Scholar
  21. Craven, L., Tang, M. X., Gorman, G. S., De Sutter, P., et al. (2017). Novel reproductive technologies to prevent mitochondrial disease. Human Reproduction Update, 23(5), 501–519.CrossRefGoogle Scholar
  22. Craven, L., Tuppen, H. A., Greggains, G. D., Harbottle, S. J., et al. (2010). Pronuclear transfer in human embryos to prevent transmission of mitochondrial DNA disease. Nature, 465(7294), 82–85.CrossRefGoogle Scholar
  23. DoH. (2000). Stem cell research: Medical progress with responsibility. Department of Health.Google Scholar
  24. DoH. (2014). Mitochondrial donation: Government response to the consultation on draft regulations to permit the use of new treatment techniques to prevent the transmission of a serious mitochondrial disease from mother to child. https://www.gov.uk/government/consultations/serious-mitochondrial-disease-new-techniques-to-prevent-transmission [accessed 27 Nov 2017].
  25. DiMauro, S. (2011). A history of mitochondrial diseases. Journal of Inherited Metabolic Disease, 34(2), 261–276.CrossRefGoogle Scholar
  26. Dimond, R. (2013). Patient and family trajectories of mitochondrial disease: Diversity, uncertainty and genetic risk. Life Sciences, Society and Policy, 9(1), 2.CrossRefGoogle Scholar
  27. Dimond, R. (2015). Techniques of donation: ‘Three parents’, anonymity and disclosure. Journal of Medical Law and Ethics, 3(3), 165–173.CrossRefGoogle Scholar
  28. Dimond, R., & Stephens, N. (2017). Three persons, three genetic contributors, three parents: Mitochondrial donation, genetic parenting and the immutable grammar of the ‘three x x’. Health.  https://doi.org/10.1177/1363459316689380.
  29. Ehrich, K., Williams, C., & Farsides, B. (2008). The embryo as moral work object: PGD/IVF staff views and experiences. Sociology of Health & Illness, 30(3), 772–787.CrossRefGoogle Scholar
  30. Franklin, S. (2013). Biological relatives: IVF, stem cells and the future of kinship. Durham, NC: Duke University Press. Google Scholar
  31. Franklin, S., & McKinnon, S. (Eds.). (2001). Relative values: Reconfiguring kinship studies. Durham, NC: Duke University Press.Google Scholar
  32. Frith, L., & Gabbay, M. (2011). Ethical boundary-work in the infertility clinic. Sociology of Health & Illness, 33(4), 570–585.CrossRefGoogle Scholar
  33. Garfinkel, H. (1967). Studies in ethnomethodology. Englewood Cliffs, NJ: Prentice-Hall.Google Scholar
  34. Gieryn, T. F. (1983). Boundary-work and the demarcation of science from non-science: Strains and interests in professional ideologies of scientists. American Sociological Review, 48(6), 781–795.CrossRefGoogle Scholar
  35. Gieryn, T. F. (1999). Cultural boundaries of science: Credibility on the line. Chicago: University of Chicago Press.Google Scholar
  36. Goffman, E. (1959). The presentation of self in everyday life. Garden City, NY: Anchor Books.Google Scholar
  37. Gómez-Tatay, L., Hernández-Andreu, J. M., & Aznar, J. (2017). Mitochondrial modification techniques and ethical issues. Journal of Clinical Medicine, 6(3), 25.CrossRefGoogle Scholar
  38. González-Santos, S. P. (2017). Shifting the focus in the legal analysis of the first MST case. Journal of Law and the Biosciences, 4(3), 611–616.Google Scholar
  39. Haimes, E., & Taylor, K. (2017). Sharpening the cutting edge: Additional considerations for the UK debates on embryonic interventions for mitochondrial diseases. Life Sciences, Society and Policy, 13(1), 1.CrossRefGoogle Scholar
  40. Haimes, E., Taylor, K., & Turkmendag, I. (2012). Eggs, ethics and exploitation? Investigating women’s experiences of an egg sharing scheme. Sociology of Health & Illness, 34(8), 1199–1214.CrossRefGoogle Scholar
  41. Hamzelou, J. (2016, September 27). Exclusive: World’s first baby born with new ‘3 parent’ technique. New Scientist. https://www.newscientist.com/article/2107219-exclusive-worlds-first-baby-born-with-new-3-parent-technique [accessed 13 Nov 2017].
  42. Haran, J., Kitzinger, J., McNeil, M., & O’Riordan, K. (2008). Human cloning in the media: From science fiction to science practice. London: Taylor & Francis.Google Scholar
  43. Hargreaves, L. P. (2014). Coenzyme Q10 as a therapy for mitochondrial disease. International Journal of Biochemistry & Cell Biology, 49, 105–111.CrossRefGoogle Scholar
  44. Harvey, A., & Salter, B. (2012). Anticipatory governance: Bioethical expertise for human/animal chimeras. Science as Culture, 21(3), 291–313.CrossRefGoogle Scholar
  45. Hens, K., Dondorp, W., & de Wert, G. (2015). A leap of faith? An interview study with professionals on the use of mitochondrial replacement to avoid transfer of mitochondrial diseases. Human Reproduction, 30(5), 1256–1262.CrossRefGoogle Scholar
  46. Herbrand, C. (2017). Mitochondrial replacement techniques: Who are the potential users and will they benefit? Bioethics, 31(1), 46–54.CrossRefGoogle Scholar
  47. Herbrand, C., & Dimond, R. (2017). Mitochondrial donation, patient engagement and narratives of hope. Sociology of Health & Illness.  https://doi.org/10.1111/1467-9566.12631.
  48. HFEA. (2011, April). Scientific review of the safety and efficacy of methods to avoid mitochondrial disease through assisted conception. http://hfeaarchive.uksouth.cloudapp.azure.com/www.hfea.gov.uk/docs/2011-04-18_Mitochondria_review_-_final_report.pdf [accessed 29 Nov 2017].
  49. HFEA. (2013, March). Mitochondria replacement consultation: Advice to governmenthttp://hfeaarchive.uksouth.cloudapp.azure.com/www.hfea.gov.uk/docs/Mitochondria_replacement_consultation_-_advice_for_Government.pdf [accessed 3 Mar 2018].
  50. HFEA. (2014). Third scientific review of the safety and efficacy of methods to avoid mitochondrial disease through assisted conception: Update 2014. http://hfeaarchive.uksouth.cloudapp.azure.com/www.hfea.gov.uk/8807.html [accessed 10 Nov 2017].
  51. HFEA. (2015). The human fertilisation and embryology (mitochondrial donation) regulations 2015. London: HFEA.Google Scholar
  52. HFEA. (2016). Scientific review of the safety and efficacy of methods to avoid mitochondrial disease through assisted conception: 2016 update. http://hfeaarchive.uksouth.cloudapp.azure.com/www.hfea.gov.uk/10557.html [accessed 29 Nov 2017].
  53. HMSO. (1987). Human fertilisation and embryology: A framework for legislation (Cm 259).Google Scholar
  54. Hochschild, A. R. (1979). Emotion work, feeling rules and social structure. American Journal of Sociology, 85, 551–575.CrossRefGoogle Scholar
  55. Hyslop, L. A., Blakeley, P., Craven, L., Richardson, J., et al. (2016). Towards clinical application of pronuclear transfer to prevent mitochondrial DNA disease. Nature, 534(7607), 383–386.CrossRefGoogle Scholar
  56. Ishii, T. (2017). Germ line genome editing in clinics: The approaches, objectives and global society. Briefings in Functional Genomics, 16(1), 46–56.CrossRefGoogle Scholar
  57. James, N. (1989). Emotional labour: Skill and work in the social regulation of feelings. Sociological Review, 37(1), 15–42.CrossRefGoogle Scholar
  58. Jasanoff, S. (2004). The idiom of co-production. In S. Jasanoff (Ed.), States of knowledge: The co-production of science and social order (pp. 1–13). London: Routledge.CrossRefGoogle Scholar
  59. Jasanoff, S. (2005). Designs on nature. Princeton, NJ: Princeton University Press.CrossRefGoogle Scholar
  60. Jasanoff, S. (2015). Future imperfect: Science, technology, and the imaginations of modernity. In S. Jasanoff & S. Kim (Eds.), Dreamscapes of modernity: Sociotechnical imaginaries and the fabrication of power. Chicago: University of Chicago Press.CrossRefGoogle Scholar
  61. Jasanoff, S., & Kim, S. (2009). Containing the atom: Sociotechnical imaginaries and nuclear power in the United States and South Korea. Minerva, 47(2), 119–146.CrossRefGoogle Scholar
  62. Jones, C., & Holme, I. (2013). Relatively (im)material: mtDNA and genetic relatedness in law and policy. Life Sciences, Society and Policy, 9(4), 1–14.Google Scholar
  63. Kent, J. (2012). Regenerating bodies: Tissue and cell therapies in the 21st century. Abindgon: Routledge.Google Scholar
  64. Kerr, A., Cunningham-Burley, S., & Tutton, R. (2007). Shifting subject positions: Experts and lay people in public dialogue. Social Studies of Science, 37(3), 385–411.CrossRefGoogle Scholar
  65. MacKenzie, D. (2006). An engine, not a camera: How financial markets shape markets. Cambridge, MA: The MIT Press.CrossRefGoogle Scholar
  66. Manwaring, N., Jones, M. M., Wang, J. J., Rochtchina, E., et al. (2007). Population prevalence of the MELAS A3243G mutation. Mitochondrion, 7, 230–233.CrossRefGoogle Scholar
  67. McNeil, M., & Haran, J. (2013). Publics of bioscience. Science as Culture, 22(4), 433–451.CrossRefGoogle Scholar
  68. Mikami, K., & Stephens, N. (2016). Local biologicals and the politics of standardization: Making ethical pluripotent stem cells in the United Kingdom and Japan. BioSocieties, 11(2), 220–239.CrossRefGoogle Scholar
  69. Mulkay, M. (1993). Rhetorics of hope and fear in the great embryo debate. Social Studies of Science, 23(4), 721–742.CrossRefGoogle Scholar
  70. Nesbitt, V., Alston, C. L., Blakely, E. L., Fratter, C., et al. (2014). A national perspective on prenatal testing for mitochondrial disease. European Journal of Human Genetics, 22(11), 1255–1259.CrossRefGoogle Scholar
  71. Newson, A. J., & Wrigley, A. (2017). Is mitochondrial donation germ‐line gene therapy? Classifications and ethical implications. Bioethics, 31(1), 55–67.CrossRefGoogle Scholar
  72. NCoB. (2012). Novel techniques for the prevention of mitochondrial DNA disorders: An ethical review. London: Nuffield Council on Bioethics.Google Scholar
  73. Novas, C., & Rose, N. (2000). Genetic risk and the birth of the somatic individual. Economy and Society, 29(4), 485–513.CrossRefGoogle Scholar
  74. O’Riordan, K., & Haran, J. (2009). From reproduction to research: Sourcing eggs, IVF and cloning in the UK. Feminist Theory, 10(2), 191–210.CrossRefGoogle Scholar
  75. Palacios-González, C. (2017). Are there moral differences between maternal spindle transfer and pronuclear transfer? Medicine, Health Care and Philosophy, 20(4), 1–9. Google Scholar
  76. Parry, S. (2003). The politics of cloning: Mapping the rhetorical convergence of embryos and stem cells in parliamentary debates. New Genetics and Society, 22(2), 177–200.CrossRefGoogle Scholar
  77. Peirce, C. S. (1905). What pragmatism is. The Monist, 15(2), 161–181.CrossRefGoogle Scholar
  78. Poulton, J., Finsterer, J., & Yu-Wai-Man, P. (2017). Genetic counselling for maternally inherited mitochondrial disorders. Molecular Diagnosis & Therapy, 21(4), 419–429.CrossRefGoogle Scholar
  79. Reubi, D. (2013). Re-moralising medicine: The bioethical thought collective and the regulation of the body in British medical research. Social Theory & Health, 11(2), 215–235.CrossRefGoogle Scholar
  80. Rose, N. (2007). The politics of life itself: Biomedicine, power, and subjectivity in the twenty-first century. Princeton, NJ: Princeton University Press.Google Scholar
  81. Rulli, T. (2016). What is the value of three-parent IVF? Hastings Center Report, 46(4), 38–47.CrossRefGoogle Scholar
  82. Salter, B., & Salter, C. (2007). Bioethics and the global moral economy: The cultural politics of human embryonic stem cell science. Science, Technology, & Human Values, 32(5), 1–28.CrossRefGoogle Scholar
  83. Science and Technology Committee. (2014, October 22). Oral evidence: Mitochondrial donation, HC 730.Google Scholar
  84. Scully, J. L. (2017). A mitochondrial story: Mitochondrial replacement, identity and narrative. Bioethics, 31(1), 37–45.CrossRefGoogle Scholar
  85. Stephens, N., & Dimond, R. (2015). Closure of a human tissue biobank: Individual, institutional, and field expectations during cycles of promise and disappointment. New Genetics and Society, 34(4), 417–436.CrossRefGoogle Scholar
  86. Stephens, N., Atkinson, P., & Glasner, P. (2013). Institutional imaginaries of publics in stem cell banking: The cases of the UK and Spain. Science as Culture, 22(4), 497–515.CrossRefGoogle Scholar
  87. Strathern, M. (1992). Reproducing the future: Essays on anthropology, kinship and the new reproductive technologies. Manchester: Manchester University Press.Google Scholar
  88. Turkmendag, I. (2018). It is just a “battery”: “Right” to know in mitochondrial replacement. Science, Technology, & Human Values, 43(1), 56–85.Google Scholar
  89. Van Lente, H. (1993). Promising technology: The dynamics of expectations in technological developments. Amsterdam: Proefschrift.Google Scholar
  90. Varvaštian, S. (2015). UK’s legalisation of mitochondrial donation in IVF treatment: A challenge to the international community or a promotion of life-saving medical innovation to be followed by others? European Journal of Health Law, 22(5), 405–425.CrossRefGoogle Scholar
  91. Wainwright, S., Williams, C., Michael, M., Farsides, B., et al. (2006). Ethical boundary-work in the embryonic stem cell laboratory. Sociology of Health & Illness, 28(6), 732–748.Google Scholar
  92. Waldby, C., & Mitchell, D. (2006). Tissue economies. Durham and London: Duke University Press.CrossRefGoogle Scholar
  93. Warnock, M. (1984). Report of the committee of inquiry into human fertilisation and embryology. London: HMSO. http://hfeaarchive.uksouth.cloudapp.azure.com/www.hfea.gov.uk/2068.html [accessed 29 Nov 2017].
  94. Watermeyer, R., & Rowe, G. (2013). Evaluation of the project: ‘Mitochondria replacement consultation’. Human Fertilisation and Embryology Authority. http://www.sciencewise-erc.org.uk/cms/mitochondria-replacement [accessed 27 Nov 2017].
  95. Williams, A., & Gajevic, S. (2013). Selling science: Source struggles, public relations, and UK press coverage of animal–human hybrid embryos. Journalism Studies, 14(4), 507–522.CrossRefGoogle Scholar
  96. Wilson, D. (2011). Creating the ‘ethics industry’: Mary Warnock, in vitro fertilization and the history of bioethics in Britain. BioSocieties, 6(2), 121–141.CrossRefGoogle Scholar
  97. Zhang, J., Zhuang, G., Zeng, Y., Grifo, J., et al. (2016). Pregnancy derived from human zygote pronuclear transfer in a patient who had arrested embryos after IVF. Reproductive Biomedicine Online, 33(4), 529–533.CrossRefGoogle Scholar

Copyright information

© The Author(s) 2018

Authors and Affiliations

  1. 1.School of Social SciencesCardiff UniversityCardiffUK
  2. 2.Social and Political SciencesBrunel University LondonLondonUK

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