I want to enrich the debate about the ethics and governance of human germline editing (HGE) by emphasizing an underappreciated, yet important, set of concerns regarding exclusionary practices, norms, and efforts that impede a broader discussion about the subject. The possibility for establishing a binding, global, regulatory framework is influenced by economic and geopolitical factors as well as historical processes and sociopolitical problems, such as anti-scientific social movements and the politicization of science. Likewise, it is influenced by different understanding, epistemic resources, and goals between the CRISPR/genome editing community and the rest of society. In this Perspective, I explain the concept of “techno-scientific colonialist paternalism” and why it negatively affects our discussion around HGE. I also discuss the pitfalls of scientific self-regulation, and finally, I advocate that the implementation of HGE should cease to allow time and care for a thoughtful global discussion to emerge.
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References
1.
van DijkeI, BoschL, BredenoordAL, et al.The ethics of clinical applications of germline genome modification: a systematic review of reasons. Human Reprod, 2018; 33:1777–1796. DOI: 10.1093/humrep/dey257.
2.
HofmannB. Technological paternalism: on how medicine has reformed ethics and how technology can refine moral theory. Science Eng Ethics, 2003; 9:343–352.
CavaliereG. Genome editing and assisted reproduction: curing embryos, society or prospective parents?. Med Health Care Philos, 2018; 21:215–225. DOI: 10.1007/s11019-017-9793-y.
5.
BraunM, DabrockP. Mind the gaps! Towards an ethical framework for genome editing. EMBO Rep, 2017; 19:197–200. DOI: 10.15252/embr.201745542.
6.
LaBarberaA.Proceedings of the International Summit on Human Gene Editing: a global discussion—Washington, D.C., December 1–3, 2015. J Assist Reprod Genet, 2016; 33:1123–1127. DOI: 10.1007/s10815-016-0753-x.
7.
BaylisF. Human genome editing: our future belongs to all of us. Issues Sci Technol, 2019; 3:42–44.
8.
ValdezE.¿Hijos a la carta? Bioderecho, beneficencia procreativa y autonomía parental reproductiva en sociedades laicas y pluralistas. In: Medina-ArellanoMJ, CapdevielleP, eds. Bioética laica. Vida, muerte, género, reproducción y familia. Mexico: Instituto de Investigaciones Jurídicas-UNAM, 2018, pp. 177–200.
9.
BaylisF. Human germline genome editing and broad societal consensus. Nat Hum Behav, 2017; 1:1–3. DOI: 10.1038/s41562-017-0103.
10.
HildebrandtCC, MarronJM. Justice in CRISPR/Cas9 research and clinical applications. AMA J Ethics, 2018; 20:E826–833. DOI: 10.1001/amajethics.2018.826.
11.
SavulescuJ, SingerP. An ethical pathway for gene editing. Bioethics, 2019; 33:221–222. DOI: 10.1111/bioe.12570.
12.
SirugoG, WilliamsSM, TishkoffSA. The missing diversity in human genetic studies. Cell, 2019; 177:26–31. DOI: 10.1016/j.cell.2019.02.048.
13.
BentleyAR, CallierS, RotimiCN. Diversity and inclusion in genomic research: why the uneven progress?. Commun Genet, 2017; 8:255–266. DOI: 10.1007/s12687-017-0316-6.
14.
CohenJ.“I feel an obligation to be balanced.” Noted biologist comes to defense of gene editing babies. Science, 2018. DOI: 10.1126/science.aaw2120.
Ortega y GassetJ. The Revolt of the Masses. New York: W.W. Norton, 1960.
17.
HochschildJ, SenM. Technology optimism or pessimism about genomic science: variation among experts and scholarly disciplines. Ann Am Acad, 2015; 658:236–252. DOI: 10.1177/0002716214558205.
18.
BourdieuP. Science of Science and Reflexivity. Chicago, IL: University of Chicago Press, 2004.
19.
FoucaultM. Security, Territory, Population. Lectures at the Collège de France. New York: Palgrave Macmillan, 2007.
FrickerM. Epistemic Injustice. Power and the Ethics of Knowing. Oxford: Oxford University Press, 2007.
31.
AndersonE. Epistemic justice as a virtue of social institutions. Soc Epistemol, 2012; 26:163–173. DOI: 10.1080/02691728.2011.652211.
32.
BrownM. Science in Democracy. Cambridge, MA: MIT Press, 2009, p. 195.
33.
National Academies of Sciences, Engineering, and Medicine. Human Genome Editing. Science, Ethics, and Governance. Scientific, Medical, and Ethical Considerations. Washington, DC: National Academies Press, 2015.
34.
National Academies of Sciences, Engineering, and Medicine. Human Genome Editing: Science, Ethics, and Governance. Washington, DC: National Academies Press, 2017.
LanderE, BaylisF, ZhangF, et al.Adopt a moratorium on heritable genome editing. Nature, 2019; 567:165–168. DOI: 10.1038/d41586-019-00726-5.
37.
SmallB, MallonM. Science, society, ethics, and trust: scientists' reflections on the commercialization and democratization of science. Int Stud Manag Organ, 2007; 37:103–124.
38.
HurlbutJB. Experiments in Democracy: Human Embryo Research and the Politics of Bioethics. New York: Columbia University Press, 2017.
39.
JasanoffS. The Ethics of Invention. Technology and the Human Future. New York: W.W. Norton, 2016.
40.
ChanS, DonovanP, DouglasT, et al.Genome editing technologies and human germline genetic modification: the Hinxton Group consensus statement. Am J Bioeth, 2015; 15:42–47. DOI: 10.1080/15265161.2015.1103814.
41.
BiH. Technique discussion of CRISPR babies—a comment to Jiankui He's research. J Med Discov, 2018; 3. DOI: 10.24262/jmd.3.4.18047.
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