In this essay I will review several arguments coming from the scientific community concerning gene editing and the gene editing technique CRISPR/Cas9. With the CRISPR/Cas9 technology it has become cheaper, easier and more precise than ever to make alterations in a person's genes. The reviewed arguments will be ordered along the NEST-ethic categories provided by Swierstra (2016). After this review I will try to answer the following question: is it ethically justified to start editing the human genome with CRISPR- Cas technology?
There are several arguments concerning the consequences of gene editing, arguments both in favour of and opposed to this technique. First of all, some people highlight the fact that CRISPR/Cas9 technology helps prevent many serious genetic diseases, for example Huntington's disease and cystic fibrosis (Sugarman, 2015; Bosley et al., 2015). On the other hand a lot of people are concerned about the safety of the technology saying it can be harmful and/or unsafe because the research backing the technology is still speculative, they also say CRISPR/Cas9 is often off target (Bosley et al., 2015; Sugarman, 2015; Smolenski, 2015; Werner & Shalev, 2015). Another argument against gene editing is about possible effects on the human gene pool. Some people think gene editing might cause lack of diversity in the (future) human genome which might affect our ability to adapt to certain circumstances (Bosley et al., 2015). Furthermore, Bosley et al. (2015) also suggest the CRISPR/Cas9 technology might eventually lead to prolonging life. They argue that there might not be enough supplies for everybody and therefore we should be careful with the technique.
Most arguments I encountered are in regard to our collective responsibilities and duties. An argument that gets a lot of attention is the argument regarding informed consent. Many people argue that future generations (i.e. embryo's that will be genetically engineered and in turn their offspring) cannot give their consent and therefore might not agree with the changes their (most likely) legal guardians would make (Sugarman, 2015; Harris, 2015; Smolenski, 2015). This argument is countered by the argument saying that unborn children are not actual persons and that it is not fair to lay the responsibility on researchers to ask consent of beings incapable to do so (Sugarman, 2015; Harris, 2015; Smolenski, 2015). Moreover, Smolenski (2015) states that parents always make (and have always made) decisions for their children prior to birth (e.g. amniocentesis) and after birth (e.g. schools, playmates). Smolenski (2015) also offers a possible counter argument by saying that all these parental decisions are reversible and can be undone by the child once they're of age, gene editing however cannot be reversed and should therefore be considered with more caution. Another argument that can be found in multiple sources is that the consequences of CRISPR/Cas9 and similar techniques are impossible to predict and therefore are not completely safe (Sugarman, 2015; Bosley et al., 2015). However, Sugarman (2015) also offers a rebuttal. He states that the previous argument does not necessarily mean the research should not be carried out, but rather more research should be done to be able to predict possible outcomes. Two arguments in favour of gene editing are offered by Sugarman (2015). First, he states it is the duty of clinician's to always choose the best treatment for their patients. And second, people have the right to reproductive autonomy and should be able to do whatever they want to do with their bodies. Another argument in favour is offered by Harris (2015) who says it is one's duty to 'produce the best possible child'. There are two arguments that could be seen as opposing arguments concerning legislation and rules relating to germline modification. First, because around the world the rules regarding gene editing are very different, there might be inconsistencies which would make research not entirely safe (Isasi, 2016). And second, the distinction between research and clinical applications is unclear and can have dangerous consequences for patients (Isasi, 2016). I think these could also be seen as a warning or cautionary arguments.
There weren't many arguments regarding justice in the articles. It was mentioned that inequality might arise because most likely in the future people will want to make more changes than one, CRISPR/Cas9 might be a relatively cheap technique but making more changes will seriously increase the costs. This would give rise to only the rich being able to change many aspects of themselves or their children while others might 'only' be able to prevent a certain illness or not even that, causing inequality (Bosley et al., 2015).
The good life
In his article Sugarman (2015) states some people are against gene editing because it 'poses a threat to human dignity'. This argument respects the boundary of human dignity by not ''meddling'' with the human body. As counter argument Sugarman (2015) explains that arguments about dignity are not valid because there are many different definitions of dignity. Another argument, concerning the control aspect of the good life, states that germline engineering might eventually lead to a society where people might be discriminated against based on their modified genes. This argument could also be seen as a meta-ethical argument because the aim of the argument is to show the CRISPR/Cas9 technology might be a slippery slope that leads to a dark future. This argument might even be seen as a 'Justice' argument because it deals with inequality. Looking at the categories of arguments above it is striking that some are quite well represented while others are not. There aren't many 'Justice' arguments for example. This might be because CRISPR/Cas9 technology is relatively cheap and therefore isn't very scarce. There is, however, an issue with distributive justice. It is very likely that the rich part of the world will first gain access to gene editing techniques (seeing as those countries perform the research and those countries invest the most in the research). Still, in the poorest parts of the world people will need it more because they suffer from disease the most. This means the gap of inequality that already exists will broaden and a lot of people will miss out on the help they (and their future generations) need. Another category of arguments that isn't as well represented as the others is 'The good life' arguments. For example the argument arguing for the dangers of playing God might also be considered in the good life argumentation. Nobody has or should have the right to make decisions that affect people's lives, health, or happiness. The idea that we might be going too far in trying to control the human being (or human genome) is another example of an argument in 'The good life' category. Swierstra (2016) says that ''We may have a deeply seated desire for being in control, but we have an equally deeply seated need for reality to resist our touch''. People love others for their eccentricities and imperfections. Once we introduce 'designer babies' in society, where parents can influence every bit of their child, a part of what it means to be human will be lost.
So the question is: what really is the good life?
The 'Consequences' and 'Rights/duties/responsibilities' are quite complete and well- represented I think. The fact that 'Rights/duties/responsibilities' is well-represented is not surprising because gene editing at this level is very new and it's understandable that most people are concerned or even scared about possible consequences of this technique and therefore want to see carefully formulated rules and regulations. Personally, I think the arguments concerning health and safety, both for and against, should definitely be taken in consideration because it concerns the safety of the people which should always be priority number one. I don't think the argument saying there will be a lack of diversity in the gene pool is a very strong one because if gene technology exists it could also eventually be used to create diversity in the gene pool. The argument stating that this technology will lead to increased life expectancy and therefore might lead to scarce resources is also not very strong in my opinion because it is too uncertain; we don't know for sure if the technology will lead to that and even then we also don't know if the resource problem still persists at that time. Another important argument regards the inability of unborn children to give consent to gene editing. I think this is a very important argument because the changes made are irreversible and might be very impactful for people and their future generations. Both the argument saying it is our responsibility to produce the best possible child and that it's the clinician's duty to choose the best treatment for their patients are at the moment not very relevant in my eyes because the safety is not yet guaranteed. In the future I think these arguments are both arguments that should be considered in favour of gene editing technology however I don't think they carry as much weight to the discussion. There is also an argument saying people should have the right to reproductive autonomy and should be able to do with their bodies what they want is, I think, generally a valid argument. I don't think it's relevant for this debate however because only some people changing their genes might have far reaching consequences for other people (e.g. the consumer eugenics argument). I think the argument concerning inequality as a result of different variations in gene editing which might lead to different social layers based on having/not having certain modifications is a very distressing possibility and should be regarded as such. I agree with Sugarman (2015) that the argument of gene editing being a threat to human dignity isn't a strong one because dignity means a lot of different things for different people. The arguments posed by Isasi (2016) concerning legislation are in my opinion not relevant in this case because those are just issues that need to be cleared up once we move forward with the research, or are not important when we don't. Personally, I don't believe playing God is necessarily a bad thing and it shouldn't stop us from helping the human race getting rid of life threatening genetic illnesses. I do however agree that it is very hard to decide what is good and bad and a lot of ethical debate will be needed to find what we should and shouldn't do with the CRISPR/Cas9 technology. An argument that is closely related to the social differences/discrimination argument is the idea that we would lose a part of what it means to be human if we were able to change every aspect of ourselves. I think this is definitely an argument worth thinking about and taking in consideration in this debate. Before the CRISPR/Cas9 technology can be used the safety of the application has to be guaranteed. Considering there are still safety issues at the moment I think the gene editing research should be done carefully and transparently to make sure the research is lead in the right direction. Because of the possible consequences for social structures or different forms of discrimination originating from people having their genes edited in a certain way, I think the only form of gene editing that should be allowed is the kind that helps people overcome genetic illnesses or similar setbacks. The fact that it will be hard to predict the consequences, as well as it being unclear what people's intentions might be regarding this technology caution is warranted.
In short, I think germline modification using CRISPR/Cas9 technology can be ethically justified and worth pursuing but only for fighting illnesses and not for aesthetically changing other parts about ourselves. This being said I also believe further research should be carried out with the utmost care and transparency because the CRISPR/Cas9 technology can have far reaching effects.
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