The UK Parliament decided yesterday to change the law to allow a new kind of fertility treatment, which involves groundbreaking scientific techniques to prevent mitochondrial disease.
The decision marks the culmination of world-leading research and a careful and steady debate about some complex scientific and ethical issues. We have been proud to be involved in this debate, with Natalie a member of the HFEA’s expert oversight committee on the public consultation on mitochondrial transfer last year.
What is mitochondrial transfer?
Every cell in the human body has about 1% mitochondrial DNA (which has an energy function, sometimes described as being the battery of a cell) and 99% nuclear DNA (which dictates a person’s genetic traits). Mitochondrial disease is where the mitochondrial DNA (which comes from the mother via her egg) is faulty. It causes a range of debilitating conditions and, in many cases, premature death.
In many cases these conditions are untreatable, because the problem is at such a basic level. UK-based researchers have, however, developed a world-leading technique to prevent mitochondrial disease before it happens. It involves taking a human egg or a human embryo from the affected mother, and replacing the faulty mitochondrial DNA with healthy mitochondrial DNA from a donor woman.
Crucially, the nuclear DNA from the mother (which carries all her significant genetic identity) is retained, but the cell (and therefore all the other cells which replicate from it as a baby grows) are healthy. For affected parents, it means that they have the choice to conceive their own genetic child, free of mitochondrial disease, and it means that the condition is eradicated for all future generations of their family.
The media have widely characterised this as ‘three person’ IVF but the terminology needs care. Three ‘person’ IVF it may be, but this is is not three ‘parent’ IVF; the mitochondrial donor passes none of her genetic traits to the child, just the power to help the cells function normally.
Why is a change in the law needed?
The Human Fertilisation and Embryology Act 1990 (as amended) carefully controls how human eggs and embryos can be used in research and in treatment in the UK. Under licence from the Human Fertilisation and Embryology Authority, the research necessary to develop the technique of mitochondrial transfer has been made possible in the UK.
However, until now the law has prohibited the next step, the use of the technique in treatment to conceive a child, because it is illegal to make modifications to human eggs and embryos for use in treatment. Yesterday, Parliament voted to change that, and to permit the technique to be used in treatment in closely controlled circumstances in the UK.
The UK will be the first country in the world where this is scientifically possible and legally allowed.
Why does it matter?
The numbers of families affected are small – around 150 children per year in the UK – but the effects of mitochondrial disease on those families are enormous. This treatment gives them the option to conceive their own genetic child and to eradicate the disease for them and for future generations of their family.
Some members of Parliament who spoke yesterday opposing the changes expressed concern about the principle of interfering with human eggs and embryos, and said it was the start of a slippery slope toward a science fiction of widespread genetic manipulation and designer babies. The ethics are important, but in debates like these we have to remember what is being asked today, and what it means to the lives it will actually impact on.
Is it not a fundamental part of the human condition that we solve our problems through science and technology? Where that gives us the ability to prevent suffering, do we not have an obligation to do so?
This news item was originally published on the Natalie Gamble and Associates blog and has been reproduced here with permission of the copyright owner.