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Resource Allocation, Treatment, Disclosure, and Mitochondrial Replacement Techniques
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Resource Allocation, Treatment, Disclosure, and Mitochondrial Replacement Techniques
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
1.Harris, J. Germline manipulation and our future worlds. The American Journal of Bioethics: AJOB2015;15(12):30–4; and Harris, J. Germline modification and the burden of human existence. Cambridge Quarterly of Healthcare Ethics. 2016;25(1):6–18.
2. de Melo-Martin I. When the milk of human kindness becomes a luxury (and untested) good. A reply to Harris’ unconditional embrace of mitochondrial replacement techniques. Cambridge Quarterly of Healthcare Ethics 2016;26(1).
3. Harris J. How to welcome new technologies: some comments on Inmaculada de Melo-Martin. Cambridge Quarterly of Healthcare Ethics 2016;26(1).
4. The advent of in vitro gametogenesis could change this fact, given that one day it might be possible to generate eggs from male induced pluripotent stem (iPS) cells and embryonic stem (ES) cells. See: Palacios-González, C, Harris, J, Testa, G. Multiplex parenting: IVG and the generations to come. Journal of Medical Ethics2014;40(11):752–8.
5.Zeviani, M, Bonilla, E, DeVivo, DC, DiMauro, S. Mitochondrial diseases. Neurologic Clinics1989;7(1):123–56.
6. Taylor RW, Taylor GA, Durham SE, Turnbull DM. The determination of complete human mitochondrial DNA sequences in single cells: implications for the study of somatic mitochondrial DNA point mutations. Nucleic Acids Research 2001;29(15):e74–e74.
7. See note 1, Harris 2015, at 31; Harris 2016, at 10.
8. Nuffield Council on Bioethics. Novel Techniques for the Prevention of Mitochondrial DNA Disorders: An Ethical Review. London: Nuffield Council on Bioethics; 2012, at vii.
10. Appleby JB. The ethical challenges of the clinical introduction of mitochondrial replacement techniques. Medicine Health Care Philosophy. 2015;18(4):501–14; and see note 8, Nuffield Council on Bioethics 2012.
11. It is worth mentioning that when referring to both MST and PNT, Harris uses the term “mitochondrial replacement therapy,” whereas de Melo-Martin and I use the term “mitochondrial replacement techniques.” For a discussion on terminology see Ravitsky, V., Birko, S., & Dupras-Leduc, R. The “Three-Parent Baby”: A Case Study of How Language Frames the Ethical Debate Regarding an Emerging Technology. The American Journal of Bioethics. 2015;15(12):57–60.
14. There is another technique, which I will not discuss here, that has been suggested for preventing the clinical expression of mtDNA diseases: ooplasmic transfer. It involves injecting cytoplasm from a donor’s oocyte, with healthy mitochondria, into an oocyte with diseased mitochondria. See Brenner CA, Barritt JA, Willadsen S, Cohen J. Mitochondrial DNA heteroplasmy after human ooplasmic transplantation. Fertility and Sterility 2000;74(3):573–8.
15. See note 2, de Melo-Martin 2016.
16. Tachibana M, Amato P, Sparman M, Woodward J, Sanchis DM, Ma H, et al. Towards germline gene therapy of inherited mitochondrial diseases. Nature 2013;493(7434):627–31.
17.Wrigley, A, Wilkinson, S, Appleby, JB. Mitochondrial replacement: ethics and identity. Bioethics. 2015;29(9):631–8.
18. Palacios-González C. Mitochondrial replacement techniques: egg donation, genealogy and eugenics. Monash Bioethics Review. 2016;34(1):37–51. Palacios-González, C. Ethics of Mitochondrial Replacement Techniques: A Habermasian Perspective. Bioethics, Forthcoming.
19.Craven, L, Tuppen, HA, Greggains, GD, Harbottle, SJ, Murphy, JL, Cree, LM, et al. Pronuclear transfer in human embryos to prevent transmission of mitochondrial DNA disease. Nature2010;465(7294):82–5.
20. See note 16, Tachibana et al. 2013.
21. See note 1, Harris 2015, at 32; Harris 2016, at 11.
22. See note 2, de Melo-Martin 2016.
23. I am not unaware of the philosophical problems surrounding early embryo individuation (i.e., fission and fusion cases). Therefore, when I talk about “curing someone,” I am not assuming that the embryo is a person, or that it cannot divide itself into two or more identical copies, or that these identical copies cannot fuse back together. Here “someone” should be understood as a shorthand for “an embryo that can give rise to a body, or bodies, that can have, or not have, an mtDNA disease.”
24. I have explored this at length elsewhere, see note 18.
33. For a recent informative discussion about the “right to know,” see: Ravelingien A, Pennings G. The right to know your genetic parents: from open-identity gamete donation to routine paternity testing. The American Journal of Bioethics: AJOB 2013;13(5):33–41; and Brandt R. Why disclosure of genetic ancestry in misattributed paternity cases should be treated differently from disclosure in adoption and gamete donation. The American Journal of Bioethics: AJOB 2013;13(5):58–60.
34. How and when to disclose are questions beyond the scope of this article.
35.Ravitsky, V. Conceived and deceived: the medical interests of donor-conceived individuals. Hastings Centre Report2012;42(1):17–22.
36. See note 33, Ravelingien, Pennings 2013, at 33.
37. For a discussion of this issue see Institute of Medicine of the National Academies. Mitochondrial Replacement Techniques: Ethical, Social, and Policy Considerations. The National Academies Press 2016; available at http://www.nap.edu/21871 (last accessed 3 Mar 2016); see note 10, Appleby 2015; and Dimond, R. Techniques of donation: “three parents”, anonymity and disclosure. Journal of Medical Law and Ethics2015;3(3):165–173.
38. “A pro tanto reason to φ is a reason that genuinely speaks in favour of φ-ing, but, while a pro tanto reason to φ favours φ-ing, it may not do so decisively: the overall balance of reasons may direct one to do otherwise.” Lenman J. Reasons for Action: Justification vs. Explanation. In: Zalta EN, ed. The Stanford Encyclopedia of Philosophy. Winter 2011; available at http://plato.stanford.edu/archives/win2011/entries/reasons-just-vs-expl/ (last accessed 4 Mar 2016).
39. See note 10, Appleby 2015, at 507.
40. See note 10, Appleby 2015, at 507.
41. See note 8, Nuffield Council on Bioethics 2012; note 17, Wrigley et al. 2015; note 37, Institute of Medicine of the National Academies 2016; Bredenoord AL, Dondorp W, Pennings G, De Wert G. Ethics of modifying the mitochondrial genome. Journal of Medical Ethics 2011;37(2):97–100; and Baylis F. The ethics of creating children with three genetic parents. Reproductive BioMedicine Online 2013;26(6):531–4.
42. See note 8, Nuffield Council on Bioethics 2012; note 10, Appleby 2015; note 37, Institute of Medicine of the National Academies 2016; note 41, Baylis 2013; Johnson MH. Tri-parenthood – a simply misleading term or an ethically misguided approach? Reproductive BioMedicine Online 2013;26(6):516–9; and Bredenoord AL, Dondorp W, Pennings G, De Wert G. Avoiding transgenerational risks of mitochondrial DNA disorders: a morally acceptable reason for sex selection? Human Reproduction 2010;25(6):1354–60.
43. See note 8, Nuffield Council on Bioethics 2012; note 10, Appleby 2015; and note 37, Institute of Medicine of the National Academies 2016.
44. See note 41, Baylis 2013; and note 37, Institute of Medicine of the National Academies 2016.
45. See note 8, Nuffield Council on Bioethics 2012; note 37, Institute of Medicine of the National Academies 2016; and Bredenoord AL, Braude P. Ethics of mitochondrial gene replacement: from bench to bedside. British Medical Journal 2010;341:c6021.
46. Baylis F. “Babies with some animal DNA in them”: a woman’s choice? International Journal of Feminist Approaches to Bioethics 2009;2(2):75–96.
47. Appleby JB. Should mitochondrial donation be anonymous? Journal of Medicine and Philosophy, Forthcoming.
48. After this paper was accepted for publication Tina Rulli’s paper ‘What Is the Value of Three-Parent IVF?’ appeared on press. I contend that the second argument that I have presented here against de Melo-Martin’s effectiveness argument could equally apply to Rulli’s cost-effectiveness argument, but I will have to leave an examination of her argument for another time. See: Rulli, Tina. What Is the Value of Three-Parent IVF?. Hastings Center Report2016;46(4):1–10.
CQ welcomes readers’ comments on articles published in the journal. Please send submissions to T. Kushner at firstname.lastname@example.org.
I am grateful to Rosamund Scott, Stephen Wilkinson, Adriana Clavel-Vázquez and John Appleby for their helpful comments and suggestions on a previous draft of this article. I also owe many thanks to the editors of the journal and to the anonymous peer-reviewers for their valuable comments and suggestions on an earlier version of this article. I am very grateful to the Wellcome Trust for funding this research via a Senior Investigator Award in Ethics and Society: The Donation and Transfer of Human Reproductive Materials (grant no: 097897/Z/11/Z).
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