Abstract
Changing the genetic makeup of living beings is expected to transform several fields of biomedicine giving rise to a number of ethical challenges including in therapy and reproductive procedures. Against this background, however, it is important to determine whether a non-heritable (somatic) procedure is taking place, which may be comparable to conventional therapy, or whether the procedure generates a heritable genetic modification which may give rise to the selection or deselection of possible future children. In this last case, the following ethical choices may then be considered. First, individuals and society may choose to believe that all lives are equal in worth and value, making any selection and classification between possible future children meaningless. Secondly, individuals and society may believe that all possible future children are equal in value but choose not to bring a certain kind of child into existence because they recognise that they themselves or society lack the necessary support and/or capacity to look after such a child. Finally, individuals and society may decide not to bring a certain kind of child into existence, because the value of his or her life is considered to be unacceptable even though they have the resources and support necessary to look after such a child. If this last choice is accepted, however, it would also mean sanctioning selective eugenic decisions between possible future children.
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Notes
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Clustered regularly-interspaced short palindromic repeats with the Cas 9 protein system.
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This reflects a ‘psychologically interconnected’ perspective. See for example Lewis, 1976. Such a psychologically interconnection would not exist, for example, between an early embryo and an adult human being since the latter would not be able to remember being an embryo.
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Even conjoined twins can be considered as distinct if they each experience their own specific identity.
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Somatic genome editing may be able to address specific cell types or tissues but may not be appropriate for treating other genetic disorders affecting a number of different tissues because targeting all the tissue may be difficult, National Academies of Sciences, Engineering, and Medicine, 2017, 88.
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Sir Winston Churchill, wartime Prime Minister of the UK, was openly disappointed when Britain resisted eugenic action on the grounds of civil liberties. In 1910, he wrote to the then UK Prime Minister expressing his support for legislation that proposed to introduce a compulsory sterilization program in the UK saying: “The unnatural and increasingly rapid growth of the feeble-minded and insane classes, coupled as it is with a steady restriction among all the thrifty, energetic and superior stocks, constitutes a national and race danger which it is impossible to exaggerate.... I feel that the source from which the stream of madness is fed should be cut off and sealed up before another year has passed.” Quoted in Amy Iggulden, “The Churchill You Didn’t Know,” The Guardian, 27 November 2002.
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For example, American Nobel Prize Laureate and co-discoverer of the structure of the DNA molecule James Watson wrote: “But diabolical as Hitler was, and I don’t want to minimize the evil he perpetuated using false genetic arguments, we should not be held in hostage to his awful past. For the genetic dice will continue to inflict cruel fates on all too many individuals and their families who do not deserve this damnation. Decency demands that someone must rescue them from genetic hells. If we don’t play God, who will?” (Watson, 1995).
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For clear evidence of the feeling of offence being taken by persons with disability in a similar situation, see the disability witnesses in the prominent French court case of Nicolas Peruche. Public Hearings of the French Senate on the 18th of December 2001 relating to the jurisprudence of the ‘Perruche’ case.
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The term a “life unworthy of life” (in German “Lebensunwertes Leben”) first occurred in the title of a book by German psychiatrist Alfred Hoche and lawyer Karl Binding, Die Freigabe der Vernichtung Lebensunwerten Lebens, (Leipzig: Verlag von Felix Meiner, 1920).
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MacKellar, C. (2023). Bioethical Decision Making and Genome Editing. In: Valdés, E., Lecaros, J.A. (eds) Handbook of Bioethical Decisions. Volume I. Collaborative Bioethics, vol 2. Springer, Cham. https://doi.org/10.1007/978-3-031-29451-8_3
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