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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/
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.