As a science journalist you cover a lot of stories over the years. Some wash over you without leaving much of a mark and some stick with you for eternity. Yesterday one of those eternal stories—probably the story that has been the strongest thread across my 17 year career—took a huge leap forward. British MPs voted to allow the creation of babies that have DNA from three people—so-called three-person IVF. If the second house of the UK Parliament—the House of Lords—also supports the measure the UK will be the first country in the world to approve such a procedure and the first baby could be born next year.
I have been covering this research for a decade and it is a rich and complex subject involving a devastating disease, some heartrending personal stories, truly amazing science and a complex ethical debate that has thoroughly tested the regulatory system in the UK.
Ingenious solution for devastating disease
In vitro fertilization with gametes from three people may sound like an outlandish piece of science but this procedure is a truly ingenious solution for a collection of devastating diseases. The cause of the illness lies in tiny structures called mitochondria which are found within the cellular fluid of almost every cell in our bodies. These are the power-packs of our cells and when defective, can cause muscle wasting, brain damage and heart failure. Those with the more severe form of the disease die early—often failing to make it out of infancy or even the delivery room.
We inherit our mitochondria from our mothers—they are passed on in her egg and so scientists across the globe have been working on ways to replace the egg’s faulty mitochondria for healthy ones donated by a second woman. The team led by Professor Doug Turnbull from Newcastle University in the UK, are pioneers in this field.
There are two techniques. In the egg repair method you take a donated egg from a healthy woman and the egg of a woman who has mitochondrial disease. The nucleus from the donor egg is removed and destroyed, and the nucleus from the egg of the affected woman is taken out and put inside the now empty donor egg. This produces one egg with the genetic material of the would-be mother, and the healthy mitochondria of the donor woman. It can then be fertilized and IVF can proceed as normal. This process can also be done at embryo stage.
The resulting baby would have the nuclear DNA of its parents—what gives it its appearance and personality—but as mitochondria have a small amount of DNA of their own, that child’s cells would also contain a very small amount of genetic material from the second woman. This would not only eradicate the disease from that child but also from all subsequent generations, as girls who develop from the corrected egg would not only have the donated mitochondria in their somatic cells but in their eggs too. That family line would be changed forever.
Germ-line therapy but not genetic modification
So here is the ethical controversy and what is quite extraordinary about this vote. The UK parliament are about to pass into law a procedure that is essentially germ-line therapy—making an alteration to a human that will not only affect their bodily tissue, but also their gametes and so will be passed on to all subsequent generations.
That is a bold step for any government and one that at times over the last decade I was not always sure they would be willing to take. Even if you accept this procedure is safe, what it comes down to is whether it constitutes genetic modification of humans. This point has been thoroughly debated through the numerous ethical and scientific consultations and parliamentary committees. Last year the UK Government’s Chief Medical Officer—Dame Sally Davies—concluded that it was germ-line therapy but not genetic modification because this procedure does not involve a change to the genes of the chromosomes—the DNA that makes us who we are. Something the MPs also accepted yesterday by passing the vote.
‘Three-person’ not ‘three-parent’
This hasn’t just been a fascinating scientific and ethical journey—it’s been a really interesting science communication journey too. When I started covering this story back in 2005—when Newcastle University first got the research licence to work on this technique—there was a definite whiff of ‘Frankenstein science’ from some media quarters, and the public’s initial reactions were often a little squeamish. The rather emotive term ‘three-parent IVF’ was bandied about from the start. Several of us pushed for the alternative term ‘three-person IVF’ because although there are three people contributing to the creation of that embryo, only two of them are parents. The other is simply an anonymous tissue donor who is no more a parent to that child than a blood or organ donor would be.
I would like to say that battle was won, but looking through the recent coverage this term still creeps in. But the overall tone has changed—it is less sensationalist and more even handed—and I believe that is due to the rigorous public debate that this procedure has been subject to, and the proactive approach taken by UK science. There were three scientific reviews by the UK regulatory body the Human Fertilisation and Embryology Authority (HFEA) which considered the safety of the technique. But the scientific community and government have learnt from science PR disasters of the past and recognized how important it was to take the public and the press along too. A review by the Nuffield Council on Bioethics, as well as a public consultation by the fertility regulator, explored the ethics of the creation of three-person babies and demonstrated broad public support. And the Science Media Centre—a UK organization that promotes accurate coverage of scientific issues – have worked hard to demystify the research for UK journalists; looking at yesterday’s vote and the coverage it got, it would seem like this approach has largely paid off.
I started this post by saying this story is one that has really left a mark on me. I will put that more strongly. It’s a story I feel a great sense of ownership for and I confess a sadness that I am away on sabbatical at MIT when such a pivotal moment happened. But when I look back on past media coverage of controversial subjects such as the MMR vaccine and I look at the way this story has been handled I feel a lot more proud of the UK science media scene that I am a part of.
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