Gene editing - how far should we go? Georgia Cole

Gene editing - how far should we go?

Georgia Cole Lower Sixth

Gene editing is a concept that has been around for several decades. However, its potential began its rapid increase in 2012 when biochemist Jennifer Doudna discovered how to use the technology ‘CRISPR’ in order to ‘cut’ and ‘paste’ genes.

CRISPR-Cas9 (Clustered Regularly Interspaced Short Palindromic Repeats) is the technology used to edit genes within a section of DNA. CRISPR technology can be programmed to target a specific section of DNA. Once this has been found, an enzyme called Cas9, which is produced by the CRISPR system, binds to the DNA and cuts it, therefore shutting this specific gene off. This gene will therefore not be expressed in an individual. This means that desired genes, hence characteristics, can be edited ‘in’ or ‘out’ of the genome.

This technique has already been put into practice, the most notable being He Jiankui’s experiment in 2018, whereby he ‘created the first human genetically edited babies’, which were immune to certain diseases such as HIV. This announcement stimulated global uproar and debate into the ethics of such endeavours. He Jiankui was sentenced to 3 years in prison and a 3 million yuan fine; however, the controversy over the idea of CRISPR gene editing in humans continues to date. As the CRISPR technology develops and becomes cheaper, its implications in the real world are becoming more realistic.

The morality of genome editing in humans is crucial as it affects every single individual on the planet. Up until now, only somatic gene therapy has been carried out. Somatic gene therapy refers to the genetic alteration of cells which will induce non-heritable changes. What this means is that any modification of the genes in a cell will end with that singular cell when it dies. This type of therapy

generally focuses on recovering diseases that are present in a single tissue, such as Cystic fibrosis or Adenosine Deaminase Deficiency. However, recently there has been speculation into introducing germline gene therapy and making it more widely accessible. Germline gene therapy is when the changes made to the genes of a cell are then inherited to the offspring of the individual. If the offspring then chooses to reproduce, the genetic changes will be further passed on down the family line. This means that we could potentially eradicate specific [W]e could potentially diseases from the human genome - forever. eradicate specific diseases from the This proposal unlocks a flurry of human genome - conflicting opinions. forever. The decisions made as a result of these opinions will have an immediate impact on all, regardless of profession or interests. An added complication is that the time in which it takes to come to a global conclusion essentially stalls progress which could be used to save lives as I write. Risks can be manipulated in the media, which results in a surge of biased beliefs. There are also concerns that, because CRISPR technology is so cheap and easy to use, it may be put into practice too quickly, without having sufficient supporting research first. Legislations such as The Gene Technology Act and The Research on Human Embryos Act attempt to put into place regulations regarding gene therapy; however this has proven difficult as gene therapy is evolving at such a fast pace. Existing laws have been made largely redundant, as they were written before germline gene therapy became reality.

Some argue that informed consent should be enough, and even though doctors are qualified to ‘know best’, the decision is ultimately down to the individual that it affects - however, where germline gene therapy is concerned, its practice affects everyone so the voices of diverse cultures must be heard. It is unfeasible to have consent from the entire human population - so who gets to decide?

Lulu and Nana - The first genetically engineered babies

Another principle which is widely applied in medicine is to not do anything until it is known for sure that it is safe and beneficial. Although similar experiments have been conducted on mice, we will not know the results of such experiments on humans until we try. If anything were to go wrong, unfortunately by then it would be too late to reverse the changes made as they would naturally be inherited down the line (unless the offspring chose not to reproduce). An example of unique insights into gene therapy are the ‘deaf lesbians’ (as commonly referred to) Sharon Duchesneau and Candy McCullough who, in 2002, deliberately chose to have a genetic test carried out on their embryos in order to select for disability. They believed that deafness was not a disability but was a ‘definition of their cultural identity’. Their foremost reason for this was that they wished to communicate with their child only through sign language - the ‘uttermost sophisticated, unique form of communication’. However, this sparked debate and investigation into whether deliberately inducing disability on unknowing offspring should be licensed. The purpose of reproductive decision making, as stated in the ‘Savulescu J. Procreative beneficence’, is to ‘offer genetic tests for the child to have the best opportunity of having the best life’. The

concept of selecting disability directly contradicts the original purpose. Anyhow, what constitutes the It is only through ‘best life’? Different things constitute the freedom that individuals will ‘best life’ for different people. Therefore, it is difficult to place laws discover what on such procedures. kind of life is best for them. John Stuart Mill, English philosopher, preached that ‘when our actions affect only ourselves, we should be free to construct and act on our own conception of what is the best life for us’. It is only through freedom that individuals will discover what kind of life is best for them. However, this ‘freedom’ may harm the offspring. Is it fair for a parent to choose a life of potential suffering or disadvantage for their offspring with their freedom? In conclusion, gene editing is a delicate topic which must be assessed in rigorous detail to ensure that the best decisions are made. The question is not whether gene editing is safe or not (as most of the research suggests that it is), it is rather whether gene editing should be used in humans. There must be a summit on human gene editing, otherwise we risk ‘programming’ ourselves into a robotic society. We must draw a line between what is a ‘disability’ and what is a ‘difference’. The existing cooperative spirit in the scientific community may start to disintegrate due to competing objectives, and impatience may influence crucial decisions which could supposedly alter the genes, and therefore characteristics, of the human race forever.

Jennifer Doudna