The opportunities

Gene editing has the potential to achieve many remarkable things, revolutionising sectors such as agriculture and medicine, potentially eradicating genetic diseases.
Like fixing a bug in our software, CRISPR can identify problem mutations in our DNA and remove or replace them with extreme precision.

There are estimated to be over 6 thousand genetic disorders, with new ones being discovered all the time. It is estimated that 65% of people suffer with a health problem during their lives caused by congenital genetic mutations. These are conditions that are either inherited from your parents or are acquired during pregnancy and already present at birth.

Imagine a future where hereditary diseases have been eradicated. Where miscarriage becomes a rare occurrence as opposed to the current rate of between 10 and 20% of known pregnancies, which are largely caused by chromosomal abnormalities. It is thought that many more miscarriages occur before a woman even knows she is pregnant.

Some patients are already reaping the rewards of gene editing technology in the form of gene therapy. As I write this page, fourteen different gene therapies have been approved for use across the US, the EU or China to treat diseases including certain types of cancer, inherited blindness, macular degeneration, an immunodeficiency disorder, neuro-muscular and blood disorders, Duchenne muscular dystrophy, spinal muscular atrophy and high cholesterol.

However, there are two distinct categories of gene editing: heritable human genome editing and somatic human genome editing.
Somatic gene editing therapies, like the ones above, target non-reproductive cells, and changes made in these cells affect only the person who receives the gene therapy.
Making them is much less risky as far as potential future impacts are concerned.
Heritable gene editing, on the other hand, changes DNA in reproductive cells (like sperm and eggs) and is much more controversial because any changes in the DNA pass on to future generations. Genetic edits in embryos are heritable.

Genetic testing during IVF currently offers new parents a chance to prevent certain conditions being passed down through generations by selecting ‘healthy’ embryos to implant.

Gene editing of embryos, if legalised, could go even further, and ‘correct’ genetic disorders in embryos, to increase the number of viable embryos available. These changes would pass on to those embryos’ children and all future descendants.

The dangers

The trouble is that gene editing technology has the potential to do a lot more than disease therapy and prevention. Some fear that genetic changes could veer into the realm of non-medical enhancement. Others have very real concerns about whether it is safe to edit the human genome at this stage.

Jennifer Doudna has been vocal about her concerns for the nefarious abuse of her discovery. She has spoken of a terrible nightmare where Adolf Hitler is introduced to her: he is wearing a pig face and asks her to tell him about her ‘amazing technology’.

It is impossible to discuss genetic changes to humans without the unsavoury history of eugenics and its terrible abuses rearing its ugly head. Some people worry about gene edits being a slippery slope leading to ‘designer babies’.

Intelligence, athletic prowess, beauty, creativity.
Enhanced sensory capabilities or behavioural traits. Even the ability to withstand changes to the environment or nuclear attack…
These are all potential avenues that could be explored.
Some of this research is already underway.

And with these fears come concerns about who gets access to gene therapies and how that affects equality and discrimination.

Ethnic or other minorities might be targeted and discriminated against, using genetics as a means to identify and then restrict particular communities, or worse: our history warns us of these very real dangers.

Then there is the question of whether a free market system in reproductive technologies will only widen the gap between the rich and the poor, as only the wealthy or powerful might be able to access such treatments, as is currently the case, to a large extent, with IVF.

Many famous films and novels have explored the dangers of a genetic class system: the idea that once we are able to peg people’s traits and talents genetically, then society will value people on this basis. A genetic class system or ‘genobility’ could be created where people might be preordained to fulfil certain roles depending on their genetic status.

Some scientists have also warned of the dangers of gene editing being used to create new weapons of mass destruction, similar to nuclear power, including ‘enhanced’ armies.

There is also a bigger philosophical question: do we have the right to make genetic changes to a future child? Do we know enough about the long term impacts on our highly complex genomes, for it ever to be considered safe?

Where next?

Whether we like it or not, we are approaching a future where, as Jamie Metzl says in his excellent book, Hacking Darwin, we will take active control of our evolutionary process by genetically selecting and altering our future offspring.

Three years after her discovery, Doudna and fellow scientists called for a ‘clinical pause’ on any application of gene editing in clinical settings, not only because she was concerned about the ethical and societal implications of altering the human genome, but also because a lot more work needed to be done to prove it was safe and efficient.

In particular, much more research was needed to understand more about off target effects: the unintended changes that might occur in the body as a result of genetic edits.

If we edit human embryos, those changes will automatically pass on to future generations. One false step like a dominant edit might trigger an unstoppable ‘biological chain reaction’ with unforeseen mutations passing down through each generation which could be catastrophic.

But some scientists consider those risks negligible, much less likely than spontaneous mutations in cells that happen all the time. And, they claim, significantly lower risk than taking a flight or having chemotherapy.

A wider societal discussion is needed about whether, just because we have the potential to make these changes, we should.  And, if we decide we do want to reap the rewards of this technology, how we do so in a way that is fair and equitable to all races and nations.

Global regulation of this sector is a key challenge, with all the accompanying difficulties in monitoring and enforcement. However, the current situation of patchwork legislation across different countries with no legally binding global agreements on how to responsibly govern the human genome, remains a real concern.

Recognising the significant ethical issues and resulting need for ‘robust oversight’, in 2018 the World Health Organisation established a global, multidisciplinary expert advisory committee to examine the scientific, ethical, social and legal challenges associated with human genome editing. That committee published a set of recommendations earlier this year along with a framework for governance.
Those can be found here. Now we need governments and institutions to act on them.

If we can attempt global agreements on nuclear disarmament and climate change, on human rights and war, then surely we can attempt to gain agreement on how to proceed with regulating this revolutionary technology that has the power to advance or condemn our species and our planet.