Epigenetics is no sci-fi

The future is already here

In the future, we may be able to use it to cure cancer, or to determine the intelligence of foetuses. Epigenetic editing sounds like science fiction, but biomedical scientist Désirée Goubert knows better. ‘Should we even want the sky to be the limit?’

By Thereza Langeler / Translation by Sarah van Steenderen / Photo by Reyer Boxem

Désirée Goubert is in the middle of explaining epigenetics when a unknown man approaches. He looks shy, like a teenager asking a girl out on a date.

‘Excuse me’, he says. ‘I didn’t mean to eavesdrop, but I couldn’t help myself. I just wanted to say that the way you explain things is amazing. I’m a complete layman, but I understood everything you said.’

Beaming, Goubert thanks him. It’s quite the compliment, considering how complicated her subject is.

Goubert is a biomedical scientist. Her PhD track at the UMCG, part of a large European research project called EpiPredict, is about epigenetic editing.

Come again?


‘Basically, it involves turning certain genes on and off again’, Goubert explains. ‘We all have DNA, which determines our hereditary traits. But it doesn’t do that alone. There is another layer above DNA: the epigenetic profile, which determines the DNA’s behaviour. And that is something we can influence.’

British scientist Brona McVittie compared it to music. DNA is the score, containing the staves and the instructions for the orchestra. But without musicians reading and playing the notes, or a conductor determining how they should do that, you can’t hear anything. It’s the epigenetics that makes the music.

When Goubert discovered this, during her biomedical studies in Hasselt and Maastricht, she was immediately fascinated. ‘I was interested in genetics as early as in high school. It was amazing to me that such a small code can have such a great influence. And when it turned out there was another layer of minuscule code that had an even larger influence, I fell in love.’

Breast cancer

The research into epigenetics is a very new field of discipline, which makes it even more fascinating. ‘We were first able to read out the entire human genome in 2002’, Goubert says. ‘People thought it was the holy grail, the key to all kinds of diseases.’

But then this higher control layer turned out to exist, one that we can influence ourselves. That means all of us, every single day. ‘Whether you eat healthily or not, if you smoke, or exercise; all these things influence your epigenetic profile.’

Goubert and her colleagues influence very specific cells: those in a breast cancer tumour. ‘The most prevalent type of breast cancer can be easily treated with hormone therapy. There is just one problem: the tumour cells become resistant if they are treated for too long.’

When that happens, the cancer often becomes more aggressive. Treatment is a race against time, where we can only hope that the therapy beats the cancer. At least, until now. Thanks to epigenetic editing, it’s possible that therapy will soon be able to always win.

Switch off

‘Whether someone can build up resistance to something and how fast they can do so is a combination of genetics and epigenetics’, Goubert explains. ‘The hormone therapy can slowly turn on certain genes, as it were. Once all the resistance genes are turned on, the therapy stops working. But we might some day be able to switch off those genes.’

She is not quite there yet, but she has succeeded in switching genes on and off. The next step is to see what she can do with the genes in a cancer cell. ‘It always takes some time to figure out which enzyme I need to switch a gene on or off’, she says. ‘And how to make sure it stays switched off.’

It’s a difficult process, but not an impossible one. ‘I don’t know how long it will take us to figure it all out’, she confesses. But it is looking promising. ‘I am optimistic that epigenetic editing will one day be used in hospitals. To cure cancer, or Alzheimer’s disease, or anything else it can be used for.’


The old adage ‘the sky is the limit’ has never been more applicable. At the same time, however, this could pose a problem. Because if biomedical scientists can change cancer cells, they can change anything: the genes that control hair and skin colour, eyes, figure. Or genes that control intelligence or aggression.

‘And let’s not forget the danger that biohackers pose’, says Goubert. ‘They could engineer a weapon that changes your epigenetic profile in such a way that you drop dead.’

It’s not a joke. It’s not spooky science fiction. Goubert is dead serious. The sky truly is the limit. ‘But is that something we should want?’

As far as she is concerned, the answer is no. We shouldn’t want to change people’s personalities – not even if it means making humanity more peaceful and sensible. We shouldn’t start engineering our children’s epigenetic profile to make sure they are all beautiful and symmetrical, smooth and perfect.

Overbred animals

‘We shouldn’t mess with human will and human characteristics’, Goubert says forcefully. ‘If we start making designer babies, we’ll eradicate diversity among humans. But diversity is so important. Take overbred animals, for example. They might look cute, but the mixed race animals are much stronger and healthier.’

She knows not everyone shares her opinion. She knows the majority of people never even think about these quandaries, mainly because they think the issue is completely hypothetical.

‘But we have to discuss these things, and everyone should be able to join in’, says Goubert. Right now, the non-scientific world is poorly informed about the concept of epigenetics. ‘That’s not okay as far as I’m concerned, because they will be confronted with it one day.’


Goubert wants the discussion to start sooner rather than later. ‘I’m worried that if we don’t properly learn how to use this technique, one day something will go so disastrously wrong that society decides to ban it altogether.’ Which would be a shame, since it can be used for so much good. Like curing terrible diseases. ‘It would be a shame if we were unable to help because we’re focusing on horror stories rather than facts.’

This issue lies at the heart of why Goubert wants to become an expert in epigenetics. To learn all the available facts, so she can make the world understand. ‘There is nothing we can’t do. We have to come together to decide where to draw the line.’

It may seem simple, drawing a line. But there is a whole lot of grey between black and white. For the situations sketched below, ask yourself what you would do.

Dilemma 1

You and your partner are expecting a child. You are extremely happy, but there is one problem. Your partner has a hereditary kidney disease. This nearly killed him when he was a child and it took a donor kidney for him to recover.

Would you have your unborn child’s epigenetic profile edited to prevent it from having the same disease?

Dilemma 2

You and your partner are expecting a child. You are extremely happy, but there is one problem. Your family has a strong inclination towards autism spectrum disorders. Your sister and brother-in-law’s daughter has been diagnosed with Asperger syndrome. She is lonely at school, and can be downright difficult at home.

Would you have your unborn child’s epigenetic profile edited to prevent it from developing a similar disorder?

Dilemma 3

You and your partner are expecting a child. You are white and were born in the Netherlands. Your partner was born in Surinam and has dark skin. White people are known to have an easier time in Dutch society than people of colour: they don’t suffer prejudice or discrimination and are more successful in education and the labour market.

Would you have your unborn child’s epigenetic profile edited to ensure it inherits your white skin rather than your partner’s dark skin?

Dilemma 4

You and your partner are expecting a child. You have a level 2 MBO certificate, and your partner has a degree from a university of applied sciences. Your environment places a lot of weight on academic performance: your family and friends and their children are all good students and have all gone to study at a high level.

Would you have your unborn child’s epigenetic profile edited to ensure it has an IQ of at least 120, making it easier for him or her to get into higher education?

Dilemma 5

Scientists have discovered the genetic source of aggression. It’s also possible to switch off the genes responsible for aggressive behaviour. The Justice minister immediately proposes a new legislation: violent offenders have to undergo mandatory epigenetic treatment to have their aggression genes turned off.

Would you vote for such a proposal?


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