The International Bioethical Norms call for a ban on the clinical applications of Heritable Genome Editing (HGE) . Public debate and public engagement are needed to further explore the ethical, social, cultural and legal repercussions of Human Germline Genome Editing. The loopholes will however always exist, even if the spirit and the intention of those Bioethical Norms appear clearly defined: The 1997 UNESCO  Declaration enforced a Moratorium  on germline genome editing in its Universal Declaration on the Human Genome and Human Rights.  And in 2005 UNESCO published Article 16 of the Universal Declaration on Bioethics and Human Rights about Protecting Future Generation : 'The impact of life sciences on future generations, including on their genetic constitution, should be given due regard'. In 2000 the Charter of Fundamental Rights of the European Union  (CFREU) prohibited eugenic practices, which could potentially the field of germline genome editing. The Oviedo Convention  which falls under the Council of Europe’s Convention on Human Rights and Biomedicine ratified the decision in 1997, that germline genome modification may not include genetic insertions which may be passed on to future generations. Furthermore the Oviedo Convention states in article 11, that "any form of discrimination against a person on grounds of his or her genetic heritage is prohibited". Article 13 of the Oviedo Convention might also be understood in slightly different fashion, namely that the genome editing is admissible for therapeutic purposes, when the modification of the descendant’s genome is not the objective but is simply incidental to the clinical process.

Most debates on HHGE focusses on other things then the effects it has on women. In discussions on genetic technologies the role of women is almost always left out. Considering that the role of women is fundamental to reproduction. HHGE research should reflect about the risks on women who are willing to participate on germline modification research. Presently there is merely talk of the possible benefits that one might expect for future children and their offspring. The effects it would have on women: There is the need for egg extraction. The process of egg extraction demands approximately 60 hours of woman's time. There are several injections (hormonal stimulation) before it and the actual extraction. And there is a considerable risk that goes along with this process. There have been deaths in the process of egg extraction. We need to have clinical trails, to get to that point, where we can say that this technology is 'safe'. Accordingly we would have to ask women if they would be willing to go through pregnancies with the implanted modified embryo. And they would have to be prepared for abortions, and miscarriages or other failed pregnancies. The harm to the women being part of those trails is quite substantial. How would that be ethical. If this technology is going to became possible and becoming the norm, there would be enormous social pressures for women to go through IVF. Obviously genome editing requires IVF. Every responsible would-be-mother would feel the pressure to undergo this process, because of the social expectation. The concern is, if the process of CRISPR together with IVF would become the norm, it could impact negatively on women.

The United Nations’ Universal Declaration of Human Rights states in Article 1: ‘All human beings are born ... equal in dignity and rights.’ Proponents of heritable human genome editing (HHGE) intend to realize modification of the DNA of the newborn and their future offsprings, so it may prevent transmissions of serious genetic diseases from one generation to another. The proponents suggest that such genome editing interventions should not be ruled out, if the following preconditions should be met: they are accepted as safe a pertinent bio-medical rationale exists societal as well as ethical challenges should have been debated and considered within public governance. Nevertheless there is concern that interventions through HHGE would intensify social imbalances and could lead to the stigmatisation of individuals with certain genetic features. Another concern is, that a reduction of the diversity in humans would take place, if some genetic expressions were to be entirely eliminated. If this technology is allowed for clinical applications, 'we' assent to the enhancement of individuals and their offspring. Enhancement would be an application of heritable human genome editing. Our social relations will be influenced by the changing of the social norms and undermine social contentment. Our pattern of our interactions will change as a result of the changing of our social norms. Using the genome editing technology to create the 'perfect' or 'ideal' human, would we risk thereby that we could become less tolerant of 'imperfections'? A person who couldn't embrace the norm of perfection would be perceived as 'disabled' and not as a person with a difference that needs to be sustained. This future imperfection would therefore be discarded, or simply not brought to life. A genuinely inclusive and pro-equality society has no preferences between all possible future persons. For all existing and future individuals are perceived with equal worth and value. The Scottish Council on Human Bioethics has produced the following animated video on whether heritable genome editing is compatible with equality in an inclusive society. Here the animated video:

The disability rights approach can contribute to the discussions around genome editing. How disabled people are portrayed and perceived in the context of genetic manipulation is contestable. Persons with disabilities understand their identity as being ability diverse and ability variant. The social dynamic around them sees them as being ability deviant and ability deficient. It is believed that the focus on a "genetic fix" is decreasing the social situation of disabled people. Genome editing would be used for fixing a genetic “defects” or "variations" which cause rare diseases. This is based on typical ability expectations. The disabled people’s right views isn’t taken into account in the debate around genome editing. The narrative of ability expectations will be a major aspect in deciding about the application of genome editing and whether we use it for human enhancement. There seems to be an instrumentalisation of individuals with disability. The germline (hereditary) genome editing is using the "prevention of disability" as a concept that coincides how disabled people are usually portrayed and viewed by the broad public. From there on genome editing will expand into the area of generating “new” or “improved” abilities, and any gene can be changed, based on the ability development it promises. If genome editing will be deemed to be sufficiently safe it could be applied for all kinds of gene variations and that what is seen as “normal” might be up for debate.

The ability to enhance one’s physical, psychological or social capability has long been in our imagination, and there are quite a lot of science fiction books dealing with that scenario. The meaning of human enhancement refers to the changing of what is considered "normal". Human enhancement may be achieved through plastic surgery, prosthetics, medical implants, medical drugs, and now genetic engineering, as well. Human Enhancement of genetic engineering The impending technological revolution of HHGE has the potential to transform every aspect of our lives. The process of using the HHGE technology for enhancement of human performance, whether it would be physically or psychologically, would transform society thoroughly. Human enhancement could become an application of genetic engineering. Human Enhancement is not per se about germline genome editing. (Germline genome editing refers to modification of reproductive cells. Germline modification affects all cells in the individual and the change is passed on to future generation). Genome editing in somatic (and so not hereditary) cells for the treatment of diseases is already in clinical trials. But the lines between therapy, prevention and enhancement are blurred. "Treating disease" or "preventing disability" would merges with “enhancement”. Gene editing can change the core characteristics of an individual and would alter their narrative identity and can alter the individual's self to a completely different person. This means the social relationships around this person is changed as well. The human enhancement process through genetic engineering may attract lots of people. Wealthy individuals are most like to be adopters of human enhancement wanting their children to acquire superior abilities to entrench their status. This would lead to an elite overclass, genetically distinct from the rest of humanity. An un-enhanced underclass would experience disadvantages as the techno-poor disabled . It could exacerbate exiting inequalities. Ableism would become more prevalent with the anticipated human enhancement. Currently a non-impaired person is someone whose body functioning is seen as performing within acceptable parameters. But the HHGE technology would make it possible to modify the appearance of the human body and its functioning beyond existing norms. It allows for a redefinition of what it means to be non-impaired. The proponents of gene editing enhancement would like to improve the human body and mind to its utmost. They conceive all human body as limited, defective and in need of improvement and they support the functioning beyond species-typical boundaries. This emerging field of enhancement medicine will push the boundaries through genetic manipulation and will apply a shift of what is the human norm . This form of ableism would give preference to enhanced humans and individuals which are un-enhanced are seen as individuals with a diminished state of being. There is public disquiet about the use of genome editing for enhancement. The concern is that genome editing is “meddling with nature”, and therefore should be avoided. Otherwise we would cross a line where we wouldn't be able to turn the clock back. Whether the application of enhancement of HHGE should be prohibited or significantly restricted is something the broader public should be included in deciding. Decisions about these powerful HHGE techniques shouldn't be made by scientist alone. Public involvement is necessary with serious deliberations and shared decision-making to really promote democratic governance. We cannot wait for the ethics of genome editing to be decided for us , we

The Child Right International Network (CRIN) states: "everyone, including children, has the right to autonomy and self-determination over their own body, and the only person with the right to make a decision about one’s body is oneself” The right to self-determination of the child would be undermined by modifying the genome in order to fulfil parental expectations backed by societal values and norms. Certain genetic conditions would be preferred. Being born wouldn't be left to chance. Do we have the right to use CRISPR technologies to design our babies according to our preferences, even if well-intentioned ? Gene editing seems to be focussed on preventing grave diseases, yet we are not being able to forsee all the consequences of that technique. Furthermore we could start to make genetic changes for the enhancement of our children, to design the babies we want. We need to become aware of it, that there is the possibility of the creation of genetically modified human beings, but do we want this? Prospective parents may have an interest in HHGE, when their prospective children might be with a genetic disease. They wish for genetically related children who are unaffected by that disease. Parents would want to make sure that their child isn't having that genetic disease. Hence they would make use of parents' right of reproductive liberty. They would want to undergo this medical procedure to enhance their child genetic trait. They would make decisions for their unborn child, as the child wouldn't be able to make them themselves at this point. What about the autonomy of the child? Couldn't we suppose that parents have the duty to protect their child against uncertain experimental technique of HHGE? Is the person, having undergone HHGE, still autonomous? The parents make the decision for the child. That would mean, that the principles of informed consent isn't applied here, because the child, about whom it is, isn't able to give consent at this point. Isn't the right to freedom of the child infringed? Doesn't the parents' right of reproductive liberty  correspond to parental duty to perfect children ? Dr. He Jiankui published his seminal paper, in which he announced that he had created the world's first gene-edited babies. This paper was published in the CRISPR Journal. The Editor however replaced Dr. HE's paper with a short report instead. The editor of that Journal argued that seven million children with lethal or debilitating genetic diseases are born, who could be treated by Genome Editing, which called " gene surgery" . He outlined five core principles, where he could envisaged "gene surgery" in human embryos being morally permissable: For compassionate reasons (families with medical needs) For serious disease only, never for aesthetic enhancement A child's autonomy is always to be respected Genes do not define who you are Everyone deserves freedom from genetic disease What does this mean? For compassionate reasons: Who get's to decide which families receive treament? What constitutes genuine need? Where does it begin? For serious disease only, never for aesthetic enhancement: Where does enhancement fit in? Respect a child's autonomy: Isn't the child's autonomy undermined for exactly this reason, that the decision is made for the child? Genes do not define you: Inequality tells another tale. Everyone deserves freedom from genetic disease: Who knows whether the clinical application of HHGE will really result in "freedom from genetic disease"? Isn't that a cheep slogan? Don't points 4. and 5. contradict each other? Principle 4. is at odds with principle 5.

What is HGE? In an early stage embryo, sperm, or egg, a specific sequence of DNA is being replaced. Genetic material is added or altered. This is also called Human Germline Genome Editing. The edited DNA becomes part of the genome of that child and will be passed on subsequent generations, therefore becoming part of the human gene pool. One the techniques is called CRISPR-Cas9. (clustered regularly interspaced short palindromic repeats - CRISPR-associated protein 9, see below). Heritable Human Genome Editing (HHGE) interventions in clinical applications are not currently available, but they could be in the future. Because Scientists propose this to be used clinically, such as to "edit-out" inherited diseases or even for the "enhancement" of human capabilities. They assert that Genome Editing will have extensive therapeutic potential. There are considerable worries about the safety of those techniques. There is the term of 'off-target' genetic modification, an unintended modification, which can alter the function of DNA. This would mean the clinical application is flawed with unpredictable results. The flaws would be passed on to the next generation.  The other application of HHGE on embryos is for basic research and not for reproductive purposes. Genome editing research uses human embryos, with regard to better understand the early embryo development and the transformation in genetic diseases. In some countries this is permitted. Thus there are 3 ways in which Heritable Human Genome Editing (HHGE) is proposed to be used: HHGE on embryos for basic research (non for reproductive purposes) HHGE for clinical application (for reproductive purposes, heritable) Enhancement of individuals (prospect of altering an embryo, by non-therapeutic intervention intended to improve or extend a human trait) Would it be justifiable to pursue the basic research application of HHGE? There is a slippery slope from using HHGE only in basic research, to using it for clinical application, to finally the enhancement.   In 2018 Dr. He Jiankui published a paper, where he announced that he had created the world's first gene-edited babies, twins, who's genome had been edited for HIV resistance. He shocked the world's scientists, and they condemned Dr. He’s actions. The consensus was that the gene-editing technology is too premature to be used for reproductive purposes. Dr. He Jiankui was sentenced (3 years in prison) for violating China's bans on the clinical application of gene-editing for reproductive purposes. Clinical Application of HHGE? The clinical applications of HHGE would be: Preventing the transmission of genetic variations that come along with severe genetic diseases (single gene disorders) Reducing the risk of common diseases (polygenic diseases), with the promise of improving human health Enhancing human capabilities far beyond what is currently possible for human beings, thereby overcoming human limitations. (Human Enhancement) "Severe genetic disease": What is severe? What is seen as "severe", is an extremely loaded expression of an emotive and cultural construction. Safety concerns regarding HHGE: There are unintended changes to the genome (called 'off-target', 'on-target' and 'mosaic'), which could possibly lead to cancer and other disabling pathologies. This would make the clinical application of HHGE rather ineffective. The child and subsequent generations could have unpredictable diseases at unpredictable times of their lives, which would make long-term follow up almost impossible. The clinical application of HHGE is controversial: Prevention of suffering is usually quoted in this context, but Heritable Human Genome Editing is carried out before the symptoms appear. Therefore the argument in favour of those interventions seems to be on wobbly chairs. Proponents suggest that the safety risk associated to off-target mutation shouldn't hamper the pursuing of HHGE. Safety risks to participants, they imply, are found in nearly all medical research. serious birth defects of genetic origin are found in 6% of all babies being born. Therefor there are moral reasons to prevent the occurrence of these genetic diseases in future generation. The clinical application of HHGE will be there to prevent genetic disease. Proponents argue that the pursuing of HHGE is morally permissible and morally desirable. What is CRISPR? The technology of  C lustered R egularly I nterspaced  S hort P alindromic R epeats (CRISPR) refers to a whole range of molecular snippers-and-pasters. Scientists have been using these molecular scissors to cut human DNA. The scientists favour this technique, because they say, it is faster, cheaper and more accurate than other genome editing techniques. They profess it to be an accurate way of deliberately altering any genome. The technique of CRISPR-Cas9 follows a specifique immune defense of bacteria. They capture small pieces of the DNA of the infecting virus, insert them into their own DNA as CRISPR, which allow the bacteria to remember the virus. The newly attacking virus get counteracted by the CRISPR-Cas9 enzyme which cuts the DNA of the virus at that specific region, which disables the virus. This immune defense system by bacteria was adapted by Scientists to edit DNA. When the CRISPR gets introduced into a cell, it recognizes the intended DNA sequence, and the Cas9 enzyme cuts the DNA at the targeted location. Genome editing is also called genome surgery, and the CRISPR mechanism is explained through the image 'gene scissors'. Though genome editing is known for its glitches. There is talk of 'off-target', 'on-target' and what is referred to as a 'mosaic'. 'Off-target' refers to when gene segments are modified where they were not targeted. 'On-target' refers to when the cell’s own repair mechanism contravenes the attainment of the desired outcome of the gene modification. 'Mosaic' refers to when the genetic modification takes effect in a certain segment of the targeted cells, not in the same way as it should be in all treated cells. (Mosaicism means incomplete editing of only some of the cells in a multicell embryo) All glitches could lead to harmful consequences. The possible short- and long-term harm from genome editing, including the possible consequences unintended off-target effects and unwanted on-target effects and of genetic mosaicism, must be completely understood before options for such medical applications are considered. Questions: Is it justifiable to proceed with the clinical application of HHGE? Do you think that the clinical application of HHGE is irresponsible, due to the considerable safety problems (medical and social) of the new technique? If the procedure for somatic (non hereditary) genome editing would be considered as medically safe, would germline (hereditary) genome editing fall under the same assumption?

Discussions amongst the Participants: Question 1: Do you think that the clinical application of Germline Genome Editing is justifiable? And how about the safety problems (medical and social, and long term) of the new technique? And how to overcome that purely individualistic considerations are payed more attention, and the societal interests are barely considered in the debate around GGE? Answers: the debate is political, heated. It can make us uncomfortable. The topic raises more questions rather than thoughts. Are we allowed to play God?What about other measures we take, are we not already playing God? (i.e. embryo screening) What about the side effects? Freedom/Responsibility: What selection criteria would come into play? What was the fear of the first artificially fertilized baby? Scepticism towards new technologies is not new. 'They are not monsters'. Outside of being a nurse, we don't see how many children are born with big problems, whom we could help with GGE. Question 2: Can certain gene manipulation procedures be considered as therapy? So if it is not therapy, what is ethically wrong with Germline Genome Editing? Answers: Is GGE a 'social therapy'? Premise: Societal ideas of how people should be. on the other hand: It is not therapy because it cannot happen with consent. if you talk about creating special people with special characteristics, there is always a construction of the hierarchical society, not a free or equal society. would making GGE available to specific people automatically lead to an excessive use of that technology? How can legislation shape GGE in society? Can we open the door only partially? Questions on why/who gets GGE, raise questions around individualism/nuclear family structure. Eugenicist undertones in the discussion are concerning, as well the use specific language. Question 3: Why should ordinary people care about heritable genome editing? Isn't it a matter that scientists and doctors should decide? Answers: Because the ethical/moral questions raised are not solely brought about by the genetic technology. In ethical questions, diverse groups are needed to elaborate. Scientists/Doctors/Bioethicists do advocacy-work trying to include society, but already write out the way it would work. Deliberation happens too late. Global debate is necessary. What would happen if GGE were allowed in some countries, but not in others. If we leave it to scientist/doctors, those who want to use GGE will be very informed technologically, but not in terms of societal impact. Genetic modification is not limited to GGE, bioethics thus play a role in a very broad discussion. Question 4: Doesn't the parents' right of reproductive liberty correspond to parental duty to perfect children ? Where does the Right of the child fit into all that? What about the autonomy of the genetically modified individual? Answers: From the elimination of disabilities to perfectionism? There is an uneasiness about the concept of making perfect children. That doesn’t sit well with my moral values. When you think about sickle cell anemia, trisomy 21, is clearer that you could say that parent have a duty to prevent that. But there also is grey area. In the evolution there are mutations, with on one hand could be dangerous, and the other hand could be advantageous with different environmental conditions. For example, sickle cell anemia. And there it is the question where a person with sickle cell anemia is living. Because is protects them against malaria, gives resistance against malaria. So, if a person is living in a malaria prone country, they will benefit from having sickle cell anemia. But if there isn’t malaria, then person gets only the negative side of sickle cell anemia, like slowly destroying the lung. Question 5: Are we serious about being a free society? And isn’t it our ethical duty to protect the prospective children against disease and disability? Answers: What is liberty? Liberty means something different in different cultures. For example, in South Africa, there is Ubuntu. Where one’s identity is within the group where one belongs to. It’s not the individual that’s important like in Europa. Make society softer, rather everyone stronger Duty to protect children against disease and disability We need guidelines for protecting. Question 6: If we permit the clinical application of Germline Genome Editing, where does that leave people with disability? Answers: Bridges to people with imperfections needed. We need guidelines. Disease and disability are not so easily defined. One could classify autism as a disability. But on the other side there are highly intelligent and gifted autistic people. Human are not just a ‘Genome’. We have to look at their heart, what they’re feeling, and care about that. We shouldn't be just physically oriented. Germline genome editing seems to physically oriented. The worth of a human shouldn’t be measured by the physical, but by their wholeness. What will 'less genetic diversity' result in 100 years? What effects does the germline genome editing have in 100 years? We don’t know. We should think more carefully about this aspect. Discussion with Speakers and Participants: MR: The public has to be brought in to discuss all the social implications. But I think that researcher should also take responsibility for the science that they are working on. DT: I think it is very important in democracies, that the public generally is involved in this, informed, and involved. So, the statement made by Matthias, I agree with that. Scientists should also take responsibility for the science that they are working on. and I think that the public engagement is very important. And my research group in fact organised a public engagement in St Africa. We avoided having any experts, so-called experts speaking to our participants at all. It was a simply naturally fostered facilitation. And speaking well, what is very interesting, is that those South African participants, after 3 events, found that it is very important for South Africa to invest in Heritable Genome Editing, in taking this technology forward. So, with the assumption that there is necessarily any kind of conflict between community values and individual values, that may in certain cases be the case. But I think different countries, different cultures may seem, may view this technology different. And some countries that actually has a more communitarian culture, might actually embrace this technology, to a far greater extend to countries that we traditionally see being more individualistic. So, I don’t want to go into too much of detail in that, but I will just say that in principle I agree, scientists have a responsibility for the science that they create. There is most certainly a greater need for public engagement, and engagement by the civil society, and whether we agree or not in these issues, it is immensely important that it be debated. CMK: Can I just say, that I agree with some of the points of Donrich, I think our society should be discussing this, trying to understand the issues, and eventually making the decisions. And I remember in the UK 2007 and 2008 there was an update on the Fertilization and Embryology Act, which enables animal egg to be fertilized by human sperm, and so making human-non-human embryonic chimera haven. The public was not for it. There is very few people, I’d say there is less than 50 people in the whole of United Kingdom that sort of understood what was taking place. The public was not following. Sometimes it’s a very big challenge, how to get the public involved, the public interest is in football and rugby in South Africa, it is not interested in Heritable Genome Editing. Unfortunately. And I find it fascinating, but the public does not. And also DT: You’d probably be surprised CMK: But also, I heard just this afternoon, one of my friends went to the Welcome Trust , which is the biggest medical charity in the world, it gives away 100 of millions of pounds of research. The Welcome Trust has got a working group on Heritable Genome Editing. And they were were all selected, on that working group, to be in favour of selection. Of selection between human being. And that does not represent the general public in the UK. Some do believe that. But there’s a lot of people who do not. And these people’s voices are selected out. Especially in the UK. When our voices are selected out, we don’t know how to have a voice in the United Kingdom. So it is a real real challenge. DT I’m sorry to hear that. KSR We are getting to the end of the discussion timewise, so I am wondering whether there is any other topic you would like to discuss, anyone? So that it is not the case, I would like to thank you very much your participation. We have covered a lot of topics from the definition of freedom, the involvement of the public, differentiation between individual and society values, different cultures. I just googled very briefly, there are 37 million more males in China and 54 million more male people in India. So, I thought that’s a good number to this conversation…. DT Can I quickly say something in regard to that. KSR yes DT When we were involved in this lawsuit about challenging the ban on preimplantation sex selection, that was indeed one of the arguments. Would it then lead to disparity between the sexes, and that’s with real concern. However, what happened in China and India is not necessarily what will happen in South Africa or in other countries of the world. So, what the judge eventually ruled, was that the government does have an interest in the sex ratio. I don’t know if I necessarily agree with that. But if you accept, that society, and its government has an interest in sex ratio, that it means that you can put in place by certain regulatory mechanisms, such as monitoring preimplantation sex selection. that it does not mean that it must be banned outright. So, what will more likely, what it the case in South Africa, that the minister of health within a year put a place a monitoring system to see to what extend this preimplantation sex selection used in South Africa is used in South Africa, to select which sex of the child and then see if those numbers is of such a high volume, that it will make in fact an impact on the population. So, there are ways to regulate that. KSR There are also regulations in China, I think that DT there are ways of freedom in that, at least in our little country. KSR Thank you. I would like to give the last word to EW, and I think we are going to sum up. EW I just want to raise one question, one the idea that is really leading to Donrich’s argument. GGE could be also used to created disability. And I think we will not find very much people who will go that way. So I’m just saying, there is both side, there is also possibility on the other side, we must keep ourselves clear about that, that this direction it would not lead. KSR Thank you very much. I think it is my job to bring this discussion to an end. First, I would like to thank you very much for taking part in this zoom event. I want to thank the speakers again, Dr. Marcy Darnovsky, Prof. Gregor Wolbring, Prof. Roberto Andorno, Prof. Donrich Thaldar and Dr. Calum MacKellar for giving us their fantastic contribution, to have such a lively discussion, thank all very much. Goodby, have a nice evening. Reflections on the talks and discussions Heritable genome editing and freedom (by Dr. Roberto Andorno) The main point I wanted to make with my presentation is that a purely individualistic view about heritable genome editing is deeply misguided and short-sighted. Focusing only on the supposed “freedom” of potential parents to have genetically modified children and to choose their traits fails to consider the importance of preserving the freedom of future children not to be genetically designed by others... Why is nobody talking about this other, more fundamental freedom? Is it just because it sounds too abstract or philosophical? Is the State not supposed to prevent such radical, irreversible harm to the people to come? It is important to be aware that this harm (children’s commodification) is inherent to the alteration of the human germline; it happens no matter how healthy or genetically “perfect” those children might be.   I understand that it is difficult to get this broader picture of the issues at stake because we in the West live in extremely individualistic, utilitarian societies, and we are not used to think in terms of the kind of society we want to leave to future generations, and even less to think about harm to future people… But I am afraid the old categories are not applicable to the new, far reaching problems we are confronted with. We need to broaden our views and become aware that we have today a “metaphysical responsibility”, in the sense that we are urged to preserve nature (including human nature) against a misuse of the new technological powers (see Hans Jonas, The Imperative of Responsibility).   This is a short post I co-authored a time ago in connection with this topic : https://www.openglobalrights.org/the-right-to-design-babies-human-rights-and-bioethics/ I understand that the critical question to answer is not answerable at all. As always in medical treats - we find this in the discussion about vaccination on Corona - there is a collective need against the individual freedom of choice. I would propose that both "states of being must be protected". Unfortunately this is to the drawback of people living with a disability (I am part of them), because disability is thereby treated as something "wrong", to be "eradicated". On the other hand HGenome editing could also be used in the future to "disable" people, if that is of help. If, at the moment, the trend and notion is towards the "beautiful", "strong" or esthetically ideals, then this is a recent perspective. If a future generation has all this, what will be the new ideal? Illnesses, accidents, aging or catastrophes will always generate disability, it is an essential part of life. There will never be a disability-free world and one must say to the advantage of humankind so to learn about humility, empathy to others and own limitations. Eberhard Weber Sept. 28, 2022

Dr. Marcy Darnovsky talks about: Human genetic manipulation is for treating patients - not designing babies. Prof. Gregor Wolbring speaks about: Medical Safety versus Societal Safety: Role of and impact on disabled people. Prof. Roberto Andorno speaks about: The forgotten common good. Why a purely individualistic approach is inadequate for dealing with the challenge of Human Germline Gene Editing. Prof. Donrich Thaldar speaks about: Heritable human genome editing in a free society. Dr. Calum MacKellar speaks about: Ethical Perspective of Heritable Genome Editing.