Genetic testing: where’s the line?
When medical testing blurs the lines with ethical decisions
When it comes to genetic testing of embryos, it’s safe to say my husband and I have a dog in the fight, having gone through two rounds of PGT-M on our embryos to remove the possibility of passing on NF1 to a future child. For more on what that means, see The Science-y Stuff. This is something we could have done through the NHS, as well as privately.
Our embryos also underwent PGT-A testing, which screens more generally for genetic defects. This is not something the NHS routinely offers (unless as a paid-for add-on), because it views PGT-A as less reliable as a test on the rapidly evolving cells that make up embryos.
In the UK, it’s all strictly regulated to testing for genetic disorders that would cause a child a serious health condition. And by serious, I mean potentially life-limiting or fatal. These must be listed conditions by the HFEA. For the NHS to conduct PGT-M, the risk of conceiving an affected pregnancy must be 10% or more and there should be no living unaffected child from the current relationship. The patient should also not be seeking PGT-M primarily due to infertility.
All of these criteria are in place because PGT-M is a very expensive procedure for clinics, but there are also ethical considerations at play. IVF exists to give people the chance at a baby, not to start playing God with genetics…
A slippery slope?
Of course, IVF in itself could be seen as playing God. Some people believe that they or others are not meant to have children and trying to overcome fertility or genetic issues through IVF is going against the natural order of things.
If you were in any doubt about which camp I fall into on that (you might be new to my writing, or just not paying attention), I’m six months pregnant with an IVF baby.
But I’m not blind to some of the conversations emerging outside the UK about just how far genetic testing can go. The UK is one of many countries globally where IVF gender selection is illegal: but there are countries that will do it, and people will travel for it.
Earlier in 2025, an Australian influencer sparked global debate after travelling to the US to undergo sex-selective IVF. She already had three children naturally – two boys and a girl – and wanted to have a girl to balance the numbers, as it were. Inevitably for anyone who discusses their life decisions on social media, she got a million opinions – plenty of them unpleasant. It was a backlash she didn’t seem entirely prepared for, which is somewhat surprising given both the ethical dilemma and her career as an influencer.
I don’t agree with abusing anyone online. Obviously. And getting personal and unpleasant is not ‘engaging in debate’ (seemingly less obviously, to a worrying number of people on social media). But there is a debate to be had here.
Particularly in the celebrity and influencer sphere, however much they may love their children, there is a concern that allowing IVF gender selection is a way of buying an aesthetic that suits their Insta-perfect lifestyles.
For what I would assume is the overwhelming majority of IVF parents, a baby – any baby – is a blessing and something to feel very fortunate for, not a commodity.
Oddly, we actually knew that our second embryo was a boy: the genetic report showed a chromosomal abnormality resulting in an extra ‘Y’ gene, meaning that it was very definitively male (XYY). Had the sex been established by the clinic in any other way, we would not have been informed.
Regardless, from our first egg collection we had two useable embryos. We transferred the chromosomally normal one first. It didn’t stick. The clinic explained to us that XYY syndrome has very few (if any) health symptoms – certainly none affecting quality of life – and so of course we tried it as our second transfer. As our only remaining embryo from that round, it was the most precious embryo in the world and its gender could not have meant less to us. It would have been unthinkable to throw that chance of a healthy life away just because we might prefer a girl.
Now, we don’t mind either way. And as it happens, that one didn’t stick either. But the IVF genetic selection conversation is getting (in my opinion) even further out of hand…
Optimise your baby
A New York start-up clinic has recently, for want of a better word, spammed the city with huge billboards, subway posters and QR-coded flyers advertising its services in ‘genetically optimising’ babies.
It offers a $9,000 service providing the full DNA sequence of up to 20 embryos for couples undergoing IVF. Screening covers more than 2,000 ‘diseases and conditions’; however, the website also mentions eye colour, hair colour, height, IQ, male-pattern baldness, BMI, as well as various mental health conditions, ADHD and autism.
When I told my husband about this, his first reaction was the same as mine: “That sounds…a bit like eugenics?” It has “your tall, blonde-haired, blue-eyed baby will be superior to the rest” vibes and we’ve all heard that somewhere before…
Besides, when I think of all the people I’ve spoken to doing IVF, I can’t imagine a single one rejecting a healthy embryo because of something as scientifically dubious as ‘the trait of being tall’. And I speak as someone who is shorter, fatter and decidedly more ginger than my two (also more intelligent) sisters.
Perhaps even more concerning than the promises of having a baby that will grow up to be America’s Next Top Model is the fact that firms such as this are promoting a hope that parents can select children that don’t have conditions that are, first and foremost, perfectly liveable with, and secondly, are not governed by one gene.
Offering to screen away the autism, for example, suggests somewhat that those people living with autism now cannot have normal, or even exceptional, lives. What’s more, it’s an offer that isn’t scientifically plausible. There are many conditions on the clinic’s list, including autism, that are the result of hundreds or thousands of genetic sequences, some of which develop as the embryo grows or later in life.
The clinic says it is clear with potential parents on how the screening works and what it can or can’t promise. But IVF is such an intensely emotional process that we rely on clinics to present us with transparent and honest information. When overwhelmed with information on top of our hopes for success, we will assume that the professionals are delivering what they advertise. I fear that this clinic (and other similar ones) is selling hopeful parents an unattainable dream.
I cannot imagine a world where I had twenty embryos to test and discarded numerous of them on the basis of a tenuous screening.
Genetic screening to prevent passing on life-limiting health conditions is one thing. Build-a-baby workshops aimed at creating the ‘optimal’ baby are quite another.