The Ethical Limits of Gene-Editing

Julia Inselseth (Law LLB, 2nd Year) discusses the notion of free market eugenics in the age of CRISPR technology.

The discovery of the CRISPR system has the potential to revolutionise medicine, giving humanity a tool capable of ‘editing out’ diseases from future generations of humans, animals, insects, plants and crops. However, this technology is surrounded with a great deal of controversy, and rightfully so…

The phrase ‘gene-editing’ has connotations of eugenics and reminds people of the countless disastrous events that have taken place throughout the course of history, all for the enhancement of the human gene pool in the search for perfection.

What is CRISPR?

First, you might be wondering what CRISPR is. CRISPR (pronounced “crisper”) is short for Clustered Regularly Interspaced Short Palindromic Repeats.

It is a family of DNA sequences found within the genomes of prokaryotic organisms, such as bacteria and archaea, and it allows us to facilitate gene-editing. If you are still confused (and you probably are, much like I was), in simpler terms, with CRISPR technology we can cut DNA in precise locations. In this way, genes can be edited, inserted and modified. This is ground-breaking, as such technology is far cheaper than prior ways of editing genes and is not as time-consuming, as prior technology could take months to implement.

This technology can be used in many areas, and so far, scientists have experimented with a variety of organisms: from creating mushrooms that do not brown easily, to treating deafness in mice. However, the most controversial applications of CRISPR that bring about ethical and moral questions are the ones on us, humans.

The Two Bright Lines

With the help of CRISPR, scientists are hoping to find new treatments that could potentially cure diseases, such as HIV and cancer. Clinical trials involving CRISPR-edited cells in cancer therapy have already commenced in China and the U.S., and many more are to come. Such application of CRISPR is referred to as ‘gene-therapy’, that is, using the technology to cure diseases and illnesses. Basically, it is a form of modern medicine and these applications are accepted.

The controversial applications of CRISPR are ‘gene-enhancing’ and ‘germline’, rather than ‘somatic’ gene modifications. Those are the two bright lines which scientists are wary to pass, as there are various ethical and moral concerns about such experimentation (these will be addressed later). So, you might be wondering what this means – let me explain the medical terms below:

‘Gene-enhancing’ is anything that goes beyond a person’s medical needs: editing a patient’s eye colour, level of intelligence, height, muscle mass, physical ability, and so on.

‘Germline’ modifications are applied to the embryos, sperm or eggs, and therefore, alter the genes in all the resultant persons’ cells; this modification will be passed down the family tree further down the line.

‘Somatic’ modifications only target genes in specific types of cells (heart, lungs, blood etc.) and this is not passed down the family tree in the future.

The Blurry Line Between Enhancement and Therapy: A Back Door for Eugenics?

The main worry about gene-enhancement procedures and germline modification is that in combination these two aspects of CRISPR technology could open up a back door to eugenics. Even if strict regulations that do not allow gene-enhancements were put in place, who is to say what is classed as treatment or enhancement?

Let’s take dental care for example: white, strong teeth – are these a medical need or simply an enhancement? Even taking genetical disorders such as dwarfism – some would call it a genetical disease that needs a cure, however people with dwarfism argue that classing them as ‘disordered’, or plotting how to eradicate the genes responsible for dwarfism from the human gene pool, is highly unethical and upsetting. Or, for example, does having an extremely low IQ call for medical gene-therapy, or would this simply be an enhancement of the persons cognitive ability?

The reality is that the line between enhancements and therapy is inherently blurry and no matter how much regulation would be applied, this could lead to troublesome applications that share similarities with the concept of eugenics, especially if enhancements are combined with germline modifications that would be passed down the family line. It is troubling to think that people could play God and pick and choose the features of their children; favouring one feature over another.

Blond hair over black, green eyes over blue, tallness over shortness; it would be the historical practice of eugenics all over again; however, this time it would not be forcefully implemented by its proponents, as it had been in the past, but now it would be part of the free market, regulated by the rules of supply and demand. This brings us to another controversial and ethically dubious topic: ‘designer babies’.

‘Designer Babies’

China’s scientist, He Jiankui, stirred up a lot of controversy and sent the media into a frenzy with his gene-editing experiment. This experiment created the first gene-edited children (dubbed ‘designer babies’ by CNN, BBC and many other news channels); these children were created with the help of CRISPR technology. The experiment involved removing the gene called CCR5, which the scientist said would make the children resistant to HIV. This sparked public outcry – although this was a therapeutic, and seemingly morally good, application of CRISPR, the experiment was deemed as highly unethical, as this was the first known case of germline editing on humans (meaning this change will be passed down to further generations).

There were also concerns over the fact that removing the CCR5 gene could be linked to higher intelligence. It is known that He was aware of the scientific paper linking the removal of CCR5 gene with higher intelligence, but it is not clear whether He intended to boost the intelligence of his ‘creations’. Nevertheless, this brings us back to the same point: the line between therapy and enhancements is paper thin.

No matter if He intended to enhance the babies’ intelligence or not – it is equally worrying: the experiment shows that we have come to a point where humans are able to edit embryos with the help of CRISPR and alter the genetic make-up of generations to come. It makes us question whether ‘designer babies’ are inevitable in the future.

Free Market Eugenics & Social Inequality

Lastly – CRISPR is not only a source of good, allowing us to cure horrible diseases, it is also a source of wealth for the patent-holders. This technology holds the power to generate incredible amounts of wealth if ‘gene-enhancements’ and the so called ‘designer babies’ were to be made widely legal and accessible to consumers. Note, that such a ‘product’ would not come cheaply for consumers. So, how would a future where genetic modifications are widely accessible, in every form, look like?

Social equality is a central topic to this section of the discussion. If CRISPR were to be made a ‘product’ of the free market (that is to say that people could choose to pay for the alteration of their genes and their children’s genes) could it lead to future ‘gene-inequality’ in society? Possibly.

The more privileged upper social classes could afford this ‘product’ or ‘service’. This would result in their ability to increase their IQ and conform to societal beauty standards and ideals, giving them a further leg up in society. The lower/working classes of society would be left out – the financial barriers to accessing such a product would be too high.

Such a scenario would create an endless cycle: the upper classes would keep enhancing their performance, exponentially climbing up the social ladder, whilst the lower social classes would not be able to keep up with the new ‘norm’ of human performance, meaning they would sink further into poverty and hardship. Humanity could easily slip into a loop of social inequality and eugenics, fuelled by our pursuance of perfection.

Concluding Thoughts

We are obsessed with the idea of perfection. However, we should be wary of irresponsibly using CRISPR to pursue this ideal, as this powerful gene-editing tool could wreck the lives of generations to come. Ethics should always be the first thing in mind while applying CRISPR in gene-editing if we want to escape the possibility of a future where this tool is sold freely to anyone who can pay the price. Such a future would see humanity take ‘survival of the fittest’ to new, yet nightmarish, heights.

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