Q&A about the ethics of using new IVF techniques to prevent children inheriting incurable genetic conditions - ANSWERS BACK

[RachelMumsnet]

We're running a Q&A this week with the Wellcome Trust about that, if approved, could stop children from inheriting severe diseases by replacing faulty DNA with genetic material from a donor. It's an amazing scientific breakthrough but also a controversial one - there have already been headlines about so-called 'three-parent babies'.

The new technique has been developed specifically to prevent mitochondrial disease, an umbrella term for a number of severe medical disorders caused by genetic mutations in mitochondria (the 'batteries' that power every cell in the body). These disorders include muscular dystrophy, ataxia - and Leigh's disease, a disorder that has killed every one of Sharon Bernardi's seven children.

Scientists at Newcastle University are developing the new technique. It uses IVF technology to transfer genetic material between the mother's egg and a donor egg, to ensure the child won't develop the disease. Only a tiny proportion of the child's DNA - less than 1 per cent - will come from the donor. But some people argue that it shouldn't be permitted because a child born this way would have 'three parents'.

The government has launched a public consultation so that everyone has a chance to share their views about this.  And they would particularly like to hear what Mumsnetters think: should doctors be allowed to use this technique to treat affected families or not?

The Wellcome Trust, a medical research charity which is funding the Newcastle scientists, has invited experts Doug Turnbull (who is developing the technique at Newcastle) and Susan Golombok (a University of Cambridge expert on the impact on families of using techniques such as IVF) to answer your questions.

Post your questions to Doug and Susan before end of Friday 5 October and we'll link to their answers from this thread on 18 October.

[Trills]

But some people argue that it shouldn't be permitted because a child born this way would have 'three parents'.

What's wrong with having 3 parents?

[bowerbird]

A child born this way would have three parents? What?

Children are born to parents using donor egg and sperm via IVF. I haven't heard any objection as to a "third parent" about this situation. Nor should there be. It's vicious nonsense.

I'm all in favour of wiping out these horrific diseases that cause tremendous suffering. Good luck to the scientists.

[Trills]

If you had:

donor egg
donor sperm
donor mitochrondria
surrogate womb
two parents who raised you

you could have six parents.

[AMumInScotland]

The 3-parent argument is nonsense. There seem to be some meaningful arguments against this research - it is still experimental and may not work, and the same ethical questions apply as to any IVF (creation of spare embryos etc), but I think the people trying to whip up concern about babies with 3 parents are just trying to be as emotive as possible. Most people have no idea that their cells even contain mitochondria with separate DNA, much less care where it comes from.

[gazzalw]

I think these scientific advances are tampering way too much with Nature - it's a minefield and it's bound to come unstuck somewhere down the line (and no, I'm not in the least bit religious).

[DuelingFanjo]

I had IVF and was a bit scared about assisted hatching ( here ) but I had it and my son was born. IMO the technique described in this thread will only be used very rarely and only as part of IVF for people who very much want to have a baby but can't.

I am interested in what Susan Golombok has to say on the 'impact on families of using techniques such as IVF' - in my experience the IVF can be quite hard but the overall outcome, if a live birth, is worth it. I imagine those objecting to this kind of treatment have never suffered from infertility or an inability to carry a child to full term.

[bowerbird]

Gazza. Why shouldn't scientific advances tamper with Nature?

Would you prefer that people who are ill don't have medical treatment and let good old Nature take its course? WTF?

[DameFanny]

I think if this can prevent babies being born into a lifetime of pain then it has to be a good thing. I'm personally much more comfortable with this than with forcing a severely compromised baby with no outlook to continue breathing via extensive equipment.

And I mean severely compromised - never ceases to amaze me what people will put a child through when they'd let a dog go.

[Himalaya]

What Amuminscotland said

[sleepyhead]

As long as it's safe for the child, donor and mother then I don't see any ethical dilemma.

[AMumInScotland]

The DNA in the mitochondria doesn't have any connection with the DNA in the nucleus of the cell, so there's no reason for that to have any consequences. We all have this weird extra DNA in our mitochondria - it just sits there getting on with energy-burning chemical reactions, and the only thing they do is multiply themselves and get shared out when new cells (including egg cells) are made.

And the children of the resulting person would be free from the original disease, as all of their mitochondria would be "clean" and come from the third person.

The DNA in your mitochondria is the same as your mother had, and her mother before her, all the way back. You get none from your father. In essence we all have a "3rd parent" who was the original "Eve" back in North Africa. Her mitochondrial DNA has come down to all of us, with only minimal changes.

[Himalaya]

Mitochondrial DNA is bacterial DNA. We all have DNA from two different people and some ancient bacteria that got engulfed back in the mists of time.

[Trills]

Asmywhimsy you seem to be saying "we don't know" when you actually mean "I don't know". A lot of this stuff is known, or can be predicted with relative confidence, because of how we know cells work.

[Trills]

Things that I would accept as being potentially reasons why this should not be done (or why it shouldn't be paid for by the NHS):

If it had a much lower success rate than "normal" IVF

If it was a much more stressful or lengthy or arduous process for the people involved

If there was a high chance that the embryos/babies/humans produced in this way would suffer side-effects (more so than "normal" IVF)

Things that I do not accept as reasons:
# Messing with nature
# Not meant to happen
# Children should have two parents
# Just use donor eggs instead
# Just adopt instead

[Trills]

That's good :)

There is a big difference between:

"we (human beings) don't know what will happen" - in which case it is posssibly something worth worrying about

and

"I (personally) don't know what will happen" - in which case if it is known I want to be told so I can decide how I feel.

[Himalaya]

Trills,

I think you are right there are 'good reasons' and 'not good reasons' why this might be I problem.

I am not sure about your first two 'good reasons' though - I guess if the only way a couple could have a biological child without high risk of genetic disease is to have this procedure it would be worth doing even if it was harder than 'normal' IVF.

I think the 'good reasons' that are relevant are the usual reasons why something would be allowed or not (or covered by the NHS or not) i.e. safety, risk, cost effectiveness. I agree with your bad reasons.

[Trills]

If it was less successful and more painful/difficult than normal IVF then that might be a good reason why the NHS wouldn't offer it, not necessarily a good reason why it shouldn't happen at all. The NHS has limited resources and at some point the benefit to the parents becomes not enough to justify the cost or time.

[HiHowAreYou]

I think it is a fantastic breakthrough. Well done Newcastle.

[Trills]

At the extreme end, if it works every single time then the NHS should offer it, if it works 1 time in 1,000 then the NHS's money should be spent elsewhere.

The reality will be somewhere in the middle, but if it's less successful than IVF is now then it may pass over the tipping point into "NHS can't afford this".

[Trills]

Then we get onto the ethics of private practitioners offering it. We could say "if people want to pay for it then they should be allowed to no matter how poor the chances are", or we could consider the doctors who offer something that has a very very low chance of success to be preying on vulnerable people and giving them false hope.

[Trills]

I haven't actually heard anything about this being less successful than IVF is currently - it may be better because the eggs.embryos (not sure which) will have been looked at in more detail and so only "good ones" will be implanted.

[purpleroses]

A boy in my class at school had muscular dystrophy, and his older brother did too. Neither survived their teens. I can still remember his mum coming into our class to explain why her son was in a wheelchair and ending up in tears after some kids asked pretty blunt questions about what would happen in the end.

How can anyone seriously say their are "ethical issues" about some vague squeemishness that DNA has come from 3 people being of comparable concern to the suffering of that poor mother who had to watch both her sons die?