As someone with a genetic condition, I’m worried genome editing might be used to make permanent changes to the blueprint of human existence

The Nuffield Council on Bioethics has reported that genome editing is “morally permissible” in certain circumstances, and predictably it has caused furious debate around the concepts such as “designer babies” and whether we should harden up our species to endure future calamities such as climate change. Now we have to consider the biological, ethical and social impacts that this technology could have on our health, our values, but critically, also the future of society.

Like many good ideas, the principle on which genome editing is based is simple: identifying a genetic variant known to be disease-causing and intervening to change it. Whilst on the surface, this may seem no different to finding a disease in a person and treating it, introducing this technology on embryos marks a significant departure from the way in which reproductive genetics has typically been approached.

For most couples, the first time they realise they are a “carrier” (i.e. a person who may transmit a disorder to their offspring but who do not have it themselves) of a genetic condition is when they have a child born with one. These families often lack a history with the condition and as such the news is often a huge shock.

The reproductive options of such parents who wish to avoid another affected child are somewhat limited. Pre-implantation genetic diagnosis gives them the option to create and test embryos through IVF. Some parents opt to conceive naturally, but undergo prenatal diagnosis to determine if the foetus is affected, while others opt to use donor gametes from a non-carrier donor. In these scenarios, however, the only option available if an affected embryo or foetus is detected is of their disposal or termination respectively.

It is this process of preventing the lives of people with genetic conditions from entering the world that has sparked fierce debate within the disability rights community as well as wider society. Many argue that these practices express negative and intolerant views about people with disabilities; to discard an embryo or foetus on the grounds of a genetic trait alone suggests that there is nothing else important to know about this potential life. That their genetic condition is so awful and intolerable that it renders all other information about them irrelevant. Their potential to be a future musician, astronaut or author, their resilience and their sense of humour are all things a genetic test cannot reveal, and yet are all things that can be eclipsed by a single disease-causing trait.

Genome editing, however, offers new options to carrier parents that, at first glance, appear to offer less traumatic outcomes. By targeting the genetic trait, rather than the future life attached to that trait, genome editing niftily gets around some of the aforementioned concerns of disability rights supporters – that screening and testing prevent lives from coming into the world that could have been fulfilling and worthwhile, not only for the child concerned, but for their family and wider society, where diversity and acceptance are highly valued.

However, this argument obscures the less immediate, but potentially as significant, implication of genome editing – that it not only changes the genetic make-up of the one particular embryo it has been used to treat, but that it also changes it for every generation that comes after it. In other words, genome editing has the capacity to make permanent changes to the very blueprint of human existence. Over time, this would likely lead to the complete elimination of particular genetic disorders from the gene pool.

As a society, now is the time for us to consider what price we are willing to pay for this. As a researcher exploring the perspectives of families living with genetic disorders and as someone with a genetic condition myself, I know first-hand that life with a genetic disorder can be as rewarding and fulfilling as it is challenging. Where our lines in the sand are drawn in terms of which conditions we, as a society, consider “serious” and in need of correction, and those which we do not, vary drastically from person to person, and are always made in a physical and social environment that handles disability in particular ways.

However, as suggested by the Nuffield Council, genetic conditions are not the only things that can be altered through genome editing. Using the technologies not only to prevent genetic disease, but even to enhance the well-being and resilience of the human race to endure, say, climate change, demonstrates the way that such technologies can quickly expand our very understanding of what an undesirable trait is as well as make parents feel ethical obligation to ensure their future child has none.

Whilst genome editing, therefore, suggests promising new reproductive pathways for parents who carry genetic disorders that may get around the difficult and often heart breaking decisions that currently face them, it is important that the voices of genetically disabled people – the very people whose lives could be eliminated through its introduction – are heard and understood. It is critical that we, as a society, consider not only what we gain through the use of genome editing, but also what we stand to lose, which, from this vantage point, we may yet not be able to see.

Felicity Boardman is assistant professor in social science and systems in health at Warwick University