The elimination of serious diseases and disabilities is a desirable goal. No human being should suffer from it. But the elimination of human diversity is not only risky; It eliminates the perspectives that enrich us. The report places the development of genome editing in its technical possibilities and in a social and political context. Here, the report stresses that genome editing should not be considered in isolation as an “innovation”, but encourages us to think about what a society in which it is widespread might look like. It describes various strategies by which HGE could be used, including at the zygote stage on embryos created by in vitro fertilization (IVF) and the possibility of generating modified gametes from induced pluripotent stem cells (iPS) instead of directly modifying embryos (pp. 37-39). Of course, many diseases have a lifestyle element – we mentioned cardiovascular diseases and infertility. Many resist the use of biological interventions to treat lifestyle problems. For example, it seems absurd to genetically modify humans so that they can tolerate a diet consisting entirely of foods of low nutritional value. There is no doubt that sex selection for non-therapeutic reasons has already sparked various controversies (Arnold et al., 2002; Sperling, 2011; Winckler, 2002).

A new debate is currently underway on the pros or cons of sexual dimorphism (Sparrow, 2010a), focusing on the supposed “normality” of the existence of two sexes and whether one should prevail over the other (Kahane and Savulescu, 2010; Slatman et al., 2010; Spatz, 2010b; Sparrow, 2012). If this normality were questioned, would it be justified to eliminate sexual dimorphism and select the best female or male genes to conceive an asexual being (Kahane and Savulescu, 2010)? This proposal could even go so far as to propose the mandatory choice of the female subject by guardians or those responsible for reproduction, considering and assuming that the most aggressive genes would come from the male individual, a highly controversial trait (Slatman et al., 2010; Sparrow, 2012; Casal, 2013). According to other authors, this debate is insignificant because sexual dimorphism has a neutral effect on human development (Kahane and Savulescu, 2010) and gender normality is accepted (Sparrow, 2012). Nevertheless, the emergence of ectogenic technologies could repeat the controversies triggered when embryo selection techniques were applied to sex selection and are currently being applied (Kendal, 2017). In 1997, this European agreement was to take the form of the “Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine”. Since this treaty was opened for signature in Oviedo, Spain, it has been commonly known as the “Oviedo Convention”. The Oviedo Convention is the first legally binding international instrument in the field of biomedical law. Under Article 13 of that convention, `intervention aimed at modifying the human genome may be carried out only for preventive, diagnostic or therapeutic purposes and only if it is not intended to modify the genetic material of offspring`. The underlined words imply a categorical prohibition of the use of HGGE for reproductive purposes. Or is a below-average IQ a handicap, something that should be altered by gene editing? It should be noted that the parents of the affected child will need to access HGE again if they want to ensure that the future children they have are not affected either. Given the costs associated with HGE, this can be seen as a division between parents who can and can`t afford it. However, such access issues already exist for parents of children with PKU, which can cost about $10,000 a year for medical nutrition and formula.

HGE will certainly be much cheaper than the cost of treating PKU over a lifetime – so it could help reduce these inequalities. For a fuller discussion, see Gyngell et al. 43 We are grateful to an anonymous reviewer who confronted us with this problem. As mentioned earlier, the first attempt to modify the human germline was made in China, and the first genetically modified babies were born in China. Therefore, one would expect the editing rules of the Chinese germline to be lax. However, China also bans genetically modified offspring. A Chinese ministerial directive states that “genetic manipulation of human gametes, zygotes and embryos for reproductive purposes is prohibited.” 38 The National Health and Family Planning Commission is responsible for enforcing this rule. As a result, Chinese authorities condemned He Jiankui`s actions as “extremely heinous” and a violation of Chinese laws and scientific ethics. [39] For a long time, it was unclear how He Jiankui should be punished. The existing rules do not provide for sanctions for violations of the above-mentioned prohibition. Nevertheless, He Jiankui was sentenced to 3 years in prison in December 2019.

Moreover, in response to the scandal, Chinese authorities have proposed tightening rules and introducing sanctions.40 Alta Charo agrees with Mills. In the closing remarks of her essay on germline technology and human rights, she addresses the possibility of a human rights discourse that completely dispenses with the concept of being human: In 2016, the Nuffield Council of Bioethics formed a working group following its report addressing ethical issues related to genome editing in the broad sense (e.g. including food). “To study ethical issues related to the attempted influence of hereditary traits in humans. in light of the likely impact of genome editing technologies.” After 2 years of work, the working group published its report entitled “Genome Editing and Human Reproduction”. Our final point concerns the relationship between determinism and control. As we show below, arguments against genetic modification highlight the moral problems that can arise when trying to control human traits. However, individual traits, just like events in the world, can remain beyond human control, even if they are very determined. For example, the collision of an asteroid with the Earth is determined by the size, speed and orbit of the two celestial bodies, as well as certain other conditions.

However, despite our knowledge of these factors, we will not be able to prevent such a collision unless human ingenuity and technology allow for the successful manipulation of these causal factors. International human rights standards have also been established for HGGE outside Europe, with the UNESCO Universal Declaration on the Human Genome and Human Rights (1997) as the main example. The declaration is not a legally binding instrument. Like the Oviedo Convention, it expresses the idea that germline publishing touches on the collective interests of humanity, albeit in a slightly different way. Article 1 states: “The human genome underpins the fundamental unity of all members of the human family and the recognition of their inherent dignity and diversity. In a symbolic sense, it is the heritage of humanity. What these words mean for HGGE is suggested by Article 24, in which the International Bioethics Committee (IBC) has the task of disseminating the principles set out in the declaration.