Three persons,three genetic contributors,three parents: Mitochondrial donation,genetic parenting and the immutable grammar of the ‘three x x’

Abstract

In 2015, two novel in vitro fertilisation techniques intended to prevent the inheritance of mitochondrial disease were legalised in the United Kingdom, following an intense period of inquiry including scientific reviews, public consultations, government guidance and debates within the Houses of Parliament. The techniques were controversial because (1) they introduced a third genetic contributor into the reproductive process and (2) they are germline, meaning this genetic change could then be passed down to subsequent generations. Drawing on the social worlds framework with a focus on implicated actors and discursive strategies, this article explores key features of the UK mitochondrial debates as they played out in real time through policy documents and public debate. First, it situates the technology within a repertoire of metaphors, emotional terminology and their politics. It then explores the immutable grammar of ‘three x x’ that formed a key component of the political debate, by focusing on how institutional reviews discursively negotiated uncertainty around genetic parentage and how beneficiaries were implicated and rendered distant. Following the 2016 announcement of the first baby born through mitochondrial donation (in Mexico) and several pregnancies (in the Ukraine), we close with a discussion about the specific nature of UK regulation within a global economy. Overall, this article contributes to a much needed sociological discussion about mitochondrial donation, emerging reproductive technologies and the cultural significance of genetic material and genetic relatedness.

Keywords

bioethics chronic illness and disability experiencing illness and narratives genetics health policy

Get full access to this article

View all access options for this article.

References

Amato

Tachibana

Sparman

. (2014) Three-parent in vitro fertilization: Gene replacement for the prevention of inherited mitochondrial diseases. Fertility and Sterility 101: 31–35.

Appleby

Karnein

(2014) On the moral importance of genetic ties in families. In: Freeman

Graham

Ebtehaj

. (eds) Relatedness in Assisted Reproduction. Cambridge: Cambridge University Press, pp. 79–96.

Atkinson

Coffey

Delamont

(2003) Key Themes in Qualitative Research: Continuities and Change. Walnut Creek, CA: AltaMira Press.

Baldwin

Culley

Hudson

. (2014) Reproductive technology and the life course: Current debates and research in social egg freezing. Human Fertility 17(3): 170–179.

Barritt

Brenner

Malter

. (2001) Mitochondria in human offspring derived from ooplasmic transplantation: Brief communication. Human Reproduction 16(3): 513–516.

Baylis

(2013) The ethics of creating children with three genetic parents. Reproductive Biomedicine Online 26: 531–534.

Baylis

(2017) Human nuclear genome transfer (so-called mitochondrial replacement): Clearing the underbrush. Bioethics 31: 7–19.

BBC Radio (2015) Mum and Dad and Mum. BBC Radio, 4 February. Available at: http://www.bbc.co.uk/programmes/b04fz6lg (accessed 11 January 2016).

Blumer

(1969) Symbolic Interactionism: Perspective and Method. Upper Saddle River, NJ: Prentice Hall.

10.

Bowker

Star

(2000) Sorting Things Out: Classification and Its Consequences. Cambridge, MA: The MIT Press.

11.

Bredenoord

Pennings

De Wert

(2008) Ooplasmic and nuclear transfer to prevent mitochondrial DNA disorders: Conceptual and normative issues. Human Reproduction Update 14: 669–678.

12.

Charmaz

(2000) Grounded theory: Objectivist and constructivist methods. In: Denzin

Lincoln

(eds) Handbook of Qualitative Research. 2nd ed. Thousand Oaks, CA: SAGE, pp. 509–536.

13.

Charmaz

(2006) Constructing Grounded Theory: A Practical Guide through Qualitative Analysis. London: SAGE.

14.

Christian Action Research & Education (CARE) (2014) Fewer than one in five back the creation of three parent children, finds new poll: Press release, 2 September. Available at: https://www.care.org.uk/news//latest-newspress-release-fewer-one-five-back-creation-three-parent-children-finds-new-poll (accessed 26 October 2016).

15.

Clarke

(1997) A social worlds research adventure: The case of reproductive science. In: Strauss

Corbin

(eds) Grounded Theory in Practice. Thousand Oaks, CA: SAGE, pp. 63–94.

16.

Clarke

(1998) Disciplining Reproduction: Modernity, American Life Sciences, and the Problems of Sex. Berkeley, CA: University of California Press.

17.

Clarke

Star

(2008) The social worlds framework: A theory/methods package. In: Hackett

Amsterdamska

Lynch

. (eds) The Handbook of Science and Technology Studies. Cambridge, MA: The MIT Press, pp. 113–139.

18.

Coghlan

(2016) Exclusive: ‘3-parent’ baby method already used for infertility. New Scientist, 10 October. Available at: https://www.newscientist.com/article/2108549-exclusive-3-parent-baby-method-already-used-for-infertility/ (accessed 24 October 2016).

19.

Craven

Tuppen

Greggains

. (2010) Pronuclear transfer in human embryos to prevent transmission of mitochondrial DNA disease. Nature 465: 82–85.

20.

Department of Health (DOH) (2014a) Mitochondrial donation: A 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. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/285251/mitochondrial_donation_consultation_document_24_02_14_Accessible_V0.4.pdf (accessed 11 January 2016).

21.

Department of Health (DOH) (2014b) 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. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/332881/Consultation_response.pdf (accessed 11 January 2016).

22.

DiMauro

(2011) A history of mitochondrial diseases. Journal of Inherited Metabolic Disease 34: 261–276.

23.

Dimond

(2013) Patient and family trajectories of mitochondrial disease: Diversity, uncertainty and genetic risk. Life Sciences, Society and Policy 9: 2.

24.

Dimond

(2015a) Social and ethical issues in mitochondrial donation. British Medical Bulletin 115(1): 173–182.

25.

Dimond

(2015b) Techniques of donation: ‘Three parents’, anonymity and disclosure. Journal of Medical Law and Ethics 3: 165–173.

26.

Driscoll

(2015) Why we want the first three-parent baby. The Sunday Times, 1 February. Available at: http://www.thesundaytimes.co.uk/sto/news/focus/article1514067.ece (accessed 27 May 2016).

27.

Edwards

(2014) Undoing kinship. In: Freeman

Graham

Ebtehaj

. (eds) Relatedness in Assisted Reproduction. Cambridge: Cambridge University Press, pp. 44–60.

28.

Franklin

(2013) Biological Relatives-IVF, Stem Cells and the Future of Kinship. Durham, NC: Duke University Press.

29.

Fujimura

(1992) Crafting science: Standardised packages, boundary objects and ‘translation’. In: Pickering

(ed.) Science as Practice and Culture. Chicago, IL: University of Chicago Press, pp. 168–211.

30.

Gamson

Modigliani

(1989) Media discourse and public opinion on nuclear power: A constructionist approach. American Journal of Sociology 95(1): 1–37.

31.

Ganchoff

(2004) Regenerating movements: Embryonic stem cells and the politics of potentiality. Sociology of Health & Illness 26(6): 757–774.

32.

Gemmell

Wolff

(2015) Mitochondrial replacement therapy: Cautiously replace the master manipulator. BioEssays 37(6): 584–585.

33.

Glaser

Strauss

(1967) The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago, IL: Aldine Publishing Company; London: Weidenfeld & Nicolson.

34.

Hacking

(1999) The Social Construction of What? Cambridge, MA: Harvard University Press.

35.

Haimes

Taylor

(2015) Rendered invisible? The absent presence of egg providers in UK debates on the acceptability of research and therapy for mitochondrial disease. Monash Bioethics Review 33: 360–378.

36.

Hamzelou

(2016) Exclusive: World’s first baby born with new ‘3 parent’ technique. New Scientist, 27 September. Available at: https://www.newscientist.com/article/2107219-exclusive-worlds-first-baby-born-with-new-3-parent-technique/ (accessed 4 October 2016).

37.

Haran

(2013) The UK hybrid embryo controversy: Delegitimising counterpublics. Science as Culture 22(4): 567–588.

38.

Haran

Kitzinger

McNeil

. (2008) Human Cloning in the Media: From Science Fiction to Science Practice. London: Routledge.

39.

Hellsten

Nerlich

(2008) Genetics and genomics: The politics and ethics of metaphorical framing. In: Bucchi

Trench

(eds) Handbook of Public Communication of Science and Technology. New York: Routledge, pp. 93–109.

40.

Herbert

Turnbull

(2015) Mitochondrial replacement to prevent the transmission of mitochondrial DNA disease. EMBO Reports 16(5): 539–540.

41.

Herbrand

(2017) Mitochondrial replacement techniques: Who are the potential users and will they benefit? Bioethics 31(1): 46–54.

42.

Hills

(2012) ‘Designer babies’ can use DNA of three parents. The Sunday Times, 5 February. Available at: http://www.thesundaytimes.co.uk/sto/news/uk_news/Health/article868734.ece (accessed 27 May 2016).

43.

House of Commons debate (2015) House of Commons, 3 February. Available at: www.publications.parliament.uk/pa/cm201415/cmhansrd/cm150203/debtext/150203-0002.htm (accessed 11 January 2016).

44.

House of Lords debate (2015) House of Lords, 24 February. Available at: www.publications.parliament.uk/pa/ld201415/ldhansrd/text/150224-0002.htm (accessed 11 January 2016).

45.

Human Fertilisation and Embryology Authority (HFEA) (2013) Mitochondria replacement consultation: Advice to Government, March. Available at: www.hfea.gov.uk/docs/HFEA_Authority_meeting_March_2013_-_Mitchondria_report.pdf (accessed 11 January 2016).

46.

Human Fertilisation and Embryology Authority (HFEA) (2014) Third scientific review of the safety and efficacy of methods to avoid mitochondrial disease through assisted conception, update 2014. Available at: http://www.hfea.gov.uk/8807.html (accessed 11 January 2016).

47.

Human Fertilisation and Embryology Authority (HFEA) (2015) Regulating mitochondrial donation. HFEA 764, 16 September. London: HFEA.

48.

Human Fertilisation and Embryology Authority (HFEA) (2016) Scientific review of the safety and efficacy of methods to avoid mitochondrial disease through assisted conception: 2016 update. Available at: http://www.hfea.gov.uk/docs/Fourth_scientific_review_mitochondria_2016.PDF (accessed 12 December 2016).

49.

Ishii

(2014) Potential impact of human mitochondrial replacement on global policy regarding germline gene modification. Reproductive BioMedicine Online 29(2): 150–155.

50.

Jasanoff

(2005) Designs on Nature: Science and Democracy in Europe and the United States. Princeton, NJ: Princeton University Press.

51.

Jaspal

Nerlich

(2017) Polarised press reporting about HIV prevention: Social representations of pre-exposure prophylaxis in the UK press. Health 21(5): 478–497.

52.

Johnson

(2013) Tri-parenthood – A simply misleading term or an ethically misguided approach? Reproductive BioMedicine Online 26: 516–519.

53.

Jones

Holme

(2013) Relatively (im) material: MtDNA and genetic relatedness in law and policy. Life Sciences, Society and Policy 9(4): 1–14.

54.

Kitzinger

Williams

Henderson

(2007) Science, media and society: The framing of bioethical debates around embryonic stem cell research between 2000 and 2005. In: Glasner

Atkinson

Greenslade

(eds) New Genetics, New Social Formations. London; New York: Routledge, pp. 204–230.

55.

Le Page

(2015) Crossing the germ line – Facing geneticists’ great taboo. New Scientist, 6 February. Available at: https://www.newscientist.com/article/dn26927-crossing-the-germ-line-facing-genetics-great-taboo/ (accessed 12 August 2016).

56.

Le Page

(2016) Exclusive: Mexico clinic plans 20 ‘three-parent’ babies in 2017. New Scientist, 9 December. Available at: https://www.newscientist.com/article/2115731-exclusive-mexico-clinic-plans-20-three-parent-babies-in-2017/ (accessed 18 December 2016).

57.

Lock

Nguyen

(2010) An Anthropology of Biomedicine. Chichester: John Wiley & Sons.

58.

Lovell-Badge

(2008) The regulation of human embryo and stem-cell research in the United Kingdom. Nature Reviews Molecular Cell Biology 9: 998–1003.

59.

McCanless

Sheldon

(2014) Genetically challenged. In: Freeman

Graham

Ebtehaj

. (eds) Relatedness in Assisted Reproduction. Cambridge: Cambridge University Press, pp. 61–78.

60.

McGee

(2012) Bioethics for Beginners: 60 Cases and Cautions from the Moral Frontier of Healthcare. Chichester: John Wiley & Sons.

61.

McKie

(2014) Families hope ‘Frankenstein science’ lobby will not stop gene cure for mitochondrial disease. The Guardian, 15 February. Available at: https://www.theguardian.com/science/2014/feb/15/mitochondrial-disease-gene-cure-ivf (accessed 27 May 2016).

62.

McLean

(2015) Mitochondrial DNA transfer: Some reflections from the United Kingdom. BioLaw Journal – Rivista di BioDiritto 2: 81–88.

63.

Mead

(1934) In: Morris

(ed.) Mind, Self and Society. Chicago: The University of Chicago Press.

64.

Mertes

Pennings

(2008) Embryonic stem cell-derived gametes and genetic parenthood: A problematic relationship. Cambridge Quarterly of Healthcare Ethics 17: 7–14.

65.

Mikami

Stephens

(2016) Local biologicals and the politics of standardization: Making ethical pluripotent stem cells in the United Kingdom and Japan. BioSocieties 11(2): 220–239.

66.

Muir

Diot

Poulton

(2015) Mitochondrial content is central to nuclear gene expression: Profound implications for human health. BioEssays 38(2): 150–156.

67.

Mulkay

(1993) Rhetorics of hope and fear in the great embryo debate. Social Studies of Science 23: 721–742.

68.

Nelkin

(2001) Molecular metaphors: The gene in popular discourse. Nature Reviews Genetics 2(7): 555–559.

69.

Nelkin

Lindee

(1995) The DNA Mystique. New York: W. H. Freeman and Company.

70.

Nelson

Ceccarelli

(2015) How metaphors about the genome constrain CRISPR metaphors: Separating the ‘text’ from its ‘editor’. The American Journal of Bioethics 15: 60–62.

71.

Novas

(2006) The political economy of hope: Patients’ organizations, science and biovalue. BioSocieties 1(3): 289–305.

72.

Nuffield Council on Bioethics (2012) Novel Techniques for the Prevention of Mitochondrial DNA Disorders: An Ethical Review. London: Nuffield Council on Bioethics. Available at: http://www.nuffieldbioethics.org/mitochondrial-dnadisorders (accessed 21 March 2015).

73.

Nuffield Council on Bioethics (2016) Genome Editing: An Ethical Review. London: Nuffield Council on Bioethics. Available at: http://nuffieldbioethics.org/project/genome-editing/ethical-review-published-september-2016/ (accessed 8 October 2016).

74.

Palacios-González

Harris

Testa

(2014) Multiplex parenting: IVG and the generations to come. Journal of Medical Ethics 40: 752–758.

75.

Poulton

Chiaratti

Meirelles

. (2010) Transmission of Mitochondrial DNA diseases and ways to prevent them. PLoS Genetics 6(8): e1001066.

76.

Progress Education Trust Annual Conference (2015) From three-person IVF to genome editing: The science and ethics of engineering the embryo. Report, Institute of Child Health, University College London, London, 9 December.

77.

Ravitsky

Birko

Dupras-Leduc

(2015) The ‘Three-Parent Baby’: A case study of how language frames the ethical debate regarding an emerging technology. The American Journal of Bioethics 15: 57–60.

78.

Reubi

(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.

79.

Richards

(2014) A British history of collaborative reproduction and the rise of the genetic connection. In: Freeman

Graham

Ebtehaj

. (eds) Relatedness in Assisted Reproduction. Cambridge: Cambridge University Press, pp. 21–43.

80.

Richards

Pennings

Appleby

(2012) Introduction. In: Richards

Pennings

Appleby

(eds) Reproductive Donation: Practice, Policy and Bioethics. Cambridge: Cambridge University Press, pp. 1–12.

81.

Robertson

(1999) Reconstituting eggs: The ethics of cytoplasm donation. Fertility and Sterility 71(2): 219–221.

82.

Rulli

(2016) What is the value of three-parent IVF? The Hastings Center Report 46(4): 38–47.

83.

Smyth

(2015) Allow three-parent IVF to help older women too, says pioneer. The Times, 9 February. Available at: http://www.thetimes.co.uk/tto/health/news/article4348194.ece (accessed 27 May 2016).

84.

Sontag

(1979) Illness as Metaphor. London: Allen Lane.

85.

Stanley

(2015) Three parent babies: Unethical, scary and wrong. The Telegraph, 3 February. Available at: http://www.telegraph.co.uk/news/health/11380784/Three-parent-babies-unethical-scary-and-wrong.html (accessed 26 October 2016).

86.

Star

Griesemer

(1989) Institutional ecology, ‘translations’ and boundary objects: Amateurs and professionals in Berkeley’s Museum of Vertebrate Zoology, 1907–39. Social Studies of Science 19(3): 387–420.

87.

Stephens

Dimond

(2016) Debating CRISPR/cas9 and mitochondrial donation: Continuity and transition performances at scientific conferences. Engaging Science, Technology, and Society 2: 312–321. Available at: http://estsjournal.org/article/view/80 (accessed 18 December 2016).

88.

Stephens

Atkinson

Glasner

(2008) The UK stem cell bank: Securing the past, validating the present, protecting the future. Science as Culture 17(1): 43–56.

89.

Strauss

(1978) A social world perspective. Studies in Symbolic Interaction 1: 119–128.

90.

Strauss

Corbin

(1998) Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. 2nd ed. Thousand Oaks, CA: SAGE.

91.

Taylor

(2013) Three-parent embryos for mitochondrial disorders Christian Medical Fellowship CMF Files no. 51. Available at: https://www.cmf.org.uk/resources/publications/content/?context=article&id=26082 (accessed 26 October 2016).

92.

The Economist (2014) Mum, Dad and Mitomum: Britain may allow babies with three biological parents. The Economist, 7 June. Available at: http://www.economist.com/news/britain/21603450-britain-may-allow-babies-three-biological-parents-mum-dad-and-mitomum

93.

Templeton

(2014) Three-parent babies ‘threat to humanity’. The Sunday Times, 5 October. Available at: http://www.thesundaytimes.co.uk/sto/news/uk_news/Health/article1467333.ece

94.

Timmermans

Shostak

(2016) Gene worlds. Health 20(1): 33–48.

95.

Williams

Wainwright

Ehrich

. (2008) Human embryos as boundary objects?: Some reflections on the biomedical worlds of embryonic stem cells and pre-implantation genetic diagnosis. New Genetics & Society 27(1): 7–18.

96.

Winston

(2015) Don’t let science fall victim to ignorance. The Telegraph, 1 February. Available at: http://www.telegraph.co.uk/news/science/science-news/11383128/Dont-let-science-fall-victim-to-ignorance-on-DNA-transfer-IVF.html (accessed 11 January 2015).

97.

Wrigley

Wilkinson

Appleby

(2015) Mitochondrial replacement: Ethics and identity. Bioethics 29: 631–638.

98.

Zhang

Liu

Luo

. (2016) First live birth using human oocytes reconstituted by spindle nuclear transfer for mitochondrial DNA mutation causing Leigh syndrome. Fertility and Sterility 106(3): e375–e376.