CYIL vol. 10 (2019)

CYIL 10 ȍ2019Ȏ OPENING THE DOORS FOR DESIGNER BABIES? … genetic modification and the preservation of legality of beneficial medical treatments. Second, it could mean that it is the aim of the scientific team to introduce a heritable modification rather than the heritability itself what is important. However, this interpretation should be refused for the reasons outlined below. Also the non-binding UNESCO document Universal Declaration on the Human Genome and Human Rights of 1997 (hereinafter “Declaration on the Human Genome”) in its Article 12 (b) states that the applications of research shall have therapeutic aims 81 . Germ-line interventions are used as an example of “practices that could be contrary to human dignity” in Article 24. Almost two decades later, the UNESCO International Bioethics Committee (IBC) slightly elaborated its approach. In the Report of the IBC on Updating its Reflection on the Human Genome and Human Rights , it noted that there are exceptional cases in which the germline modification is permissible. Two conditions must be cumulatively met: the editing is “undertaken only for preventive, diagnostic or therapeutic purposes” and its “aim is not to introduce any heritable modifications in the genome“ 82 . The second condition would probably allow for germline editing in cases when the reason for the modification would be helping a particular patient regardless of whether she will ever have children or not. This formulation seems to reconcile the possibility of germline editing with the Convention on Biomedicine (and also with the Declaration on the Human Genome). However, it might be argued that the aim of the relevant provisions in both documents is to prohibit germline modification as such. The intended aim of this modification – which is just a subjective relation of the scientific team to their work – should not be relevant. Furthermore, since germline modification would in practice happen mostly in the early stages of embryonic development, it is questionable whether and how it is possible to modify germline knowing that this modification will be heritable and not to aim at its heritability. From a more philosophical perspective, this reasoning would reflect traditional ethical theories which focus on the intention of the agent rather than consequentialism which is based on the consequences of the act (see below). Since utilitarianism which is based on consequentialism is the most popular ethical theory in contemporary bioethics, its rejection by the IBC seems unlikely. 4. Ethics of Medical Research There are three main ethical considerations connected to germline modification: doubts about the permissibility of interventions to human genome themselves, the fear of future creation of designer babies, and safety concerns.

81 Article 11 (b) of the Declaration on the Human Genome: “Freedom of research, which is necessary for the progress of knowledge, is part of freedom of thought. The applications of research, including applications in biology, genetics and medicine, concerning the human genome, shall seek to offer relief from suffering and improve the health of individuals and humankind as a whole.” 82 International Bioethics Committee. Report of the IBC on Updating its Reflection on the Human Genome and Human Rights, point 46. (2 October 2015.) accessed 30 May 2019.

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