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

(52 Posts)
RachelMumsnet (MNHQ) Mon 01-Oct-12 11:44:52

We're running a Q&A this week with the Wellcome Trust about the new IVF technique 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 Mon 01-Oct-12 11:55:41

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 Mon 01-Oct-12 12:27:35

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 Mon 01-Oct-12 12:32:08

If you had:

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

you could have six parents.

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 Mon 01-Oct-12 13:22:43

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 Mon 01-Oct-12 13:39:48

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 Mon 01-Oct-12 14:06:42

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 Mon 01-Oct-12 14:19:11

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 Mon 01-Oct-12 15:16:43

What Amuminscotland said

sleepyhead Mon 01-Oct-12 15:23:50

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

Asmywhimsytakesme Mon 01-Oct-12 16:44:56

I would worry about unforeseen consequences. How do they know this is safe longer term?

These babies would be the only humans ever to have DNA from 3 different people making them and we don't know the genetic consequences of that.

What happens when the children have children? Will their children inherit the original diseases or not?

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 Mon 01-Oct-12 17:18:40

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 Mon 01-Oct-12 17:25:01

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 Mon 01-Oct-12 17:29:49

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

Asmywhimsytakesme Mon 01-Oct-12 17:49:38

Trills yes - because I don't.

Quite happy to be corrected and there is useful info on this thread to help me.

Trills Mon 01-Oct-12 17:52:27

That's good smile

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.

Asmywhimsytakesme Mon 01-Oct-12 18:03:58

I would repeat, though, that we still don't know for sure what will happen if 3rd party DNA is used. Doesn't mean we definitely shouldn't do it, just that we don't know whether it will make any difference.

I remain unsure about this so will be reading and learning!

Himalaya Mon 01-Oct-12 18:05:11

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 Mon 01-Oct-12 18:07:42

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 Mon 01-Oct-12 18:15:21

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

Trills Mon 01-Oct-12 18:17:54

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 Mon 01-Oct-12 18:19:21

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 Mon 01-Oct-12 18:22:21

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 Mon 01-Oct-12 20:15:07

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?

EdgarAllanPond Mon 01-Oct-12 20:56:20

EVERY human alive has DNA from countless numbers of individuals - their parents, yes, but also their grandparents, great grandparents, and so on. Having DNA from more than two people isn't a problem.

I think many of the objections raised could equally be levelled against IVF (unused Embryos, egg donation etc etc) but i think these things are ok. I find the idea of egg donation as a form of exploitation very offensive - so long as all donors are fully counselled and willing participants - to view a woman deciding to donate eggs as some weak expolitee is offensive, it infanitilises her rather than showing respect for her judgement about what to do with her body.

I don't see this as any kind of attempt to create 'perfect' children - and from the sounds of things, it may create children less healthy than average, even if it can be made to work - but still that's better than condemning a small sub-set of parents to being unable to have a child that is genetically theirs.

I think only people who knew all about these conditions from first-hand experience with family members would ever choose this kind of therapy - it wouldn't be out of any kind of prejudice . It will, after all, involve kinds of conception much more problematic than the regular kind, and still less likely to work.

Evidently the more research is done, the better outcomes be made - so yes i am in favour of research.

mymatemax Tue 02-Oct-12 00:10:12

How can we have this knowledge & Expertise & not use it. How can we stand by & watch families give birth to children to watch them suffer dibilitating illness & disability to die before reaching adulthood. The saddest thing in the world to do is to stand at the graveside of a child who has died at 15 yes old & spent his childhood knowing he would never become an adult. Surely its better to bring children in to this world, free of pain & suffering.

BedHog Tue 02-Oct-12 10:09:38

I think this would be a fantastic use of modern medical knowledge. I don't think the fact it is less successful than standard IVF (if it is) should be used as an argument against it - success rates will only improve if people are given the opportunity to use the technique and refine it as they gain more experience.

AMumInScotland thankyou for your explanation. If the mitochondrial DNA only comes from the female parent, is there any way to extract it from the male parent (sperm, stem cells etc) so the embryo retains just 2 parents, or does it have to come from a donor egg?

FundusCrispyPancake Tue 02-Oct-12 10:15:43

The mDNA in the cell has come from a healthy donor so there is no reason to think there will a problem with it.

The 3rd parent argument is crap. What about children conceived using egg/sperm donors? Are adoptive parents or step parents not 'real' parents because their DNA isn't present?

It is a fantastic breakthrough, I hope it goes ahead. I used to naively believe in leaving things 'to nature'. But after 8 years TTC, my DD was finally conceived by ICSI.

Yay for science!

BedHog I think they find it easier to get the mitochondria from an egg cell because it is much larger than the average cell. But all the cells in your body contain the same mitochondria so I guess there would be no fundamental reason why they couldn't get it from the father. Not from sperm though - they are tiny and don't contain mitochondria. But ordinary body cells from the father contain them. He wouldn't normally pass them on (because of the tiny sperm not having any) but they are the same ones that his mother passed on to him and to any sisters he has, so they would be perfectly good. So I think it's just a question of how tricky it would be to get them.

Lilka Tue 02-Oct-12 11:28:23

Actually, to make a minor correction, sperm do contain mitochondria - it takes a lot of energy to be able to 'swim' all the way to the egg, and the mitochondria provide that. The mitochondria are contained in the mid section of the sperm, which drops off (along with the tail) when the head (containing the nuclear DNA) enters the egg cell

Oh I never knew that! I did sort of wonder how they managed without grin

EdgarAllanPond Tue 02-Oct-12 20:17:17

logical inconsistencies in the argument against:

it is said that women who know they carry these conditions could use donor eggs for regular IVF instead then the gene therapy is criticised on child-identity and 'having three parents' being an outcome - in actual fact i would think having some of your mothers DNA s less likely to cause an issue than none.

that the therapy may not be that successful and have bad outcomes. the 'natural' situation also results in bad health outcomes, M/c, deaths. There is no 'null' position - you can object to either side on these grounds.

cost effectiveness arguments could only be made with evidence gained by actually continuing the trial. whether the gene-replacement did well enough to be more cost-effective than only giving couples the chance of trying naturally would be something such a trial would have to look at. without doing it, you'd never know.

RachelMumsnet (MNHQ) Wed 03-Oct-12 16:40:21

Thanks for all your feedback. A reminder that we do have 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) on hand this week to answer any questions you may have about mitochondrial diseases, the breakthrough IVF technique and any issues about its usage. Do send your questions to Doug and Sue before the end of the week.

DowagersHump Wed 03-Oct-12 17:12:02

I would have no issue with this. Were I to have any more children, I would have IVF and the embryos screened for cystic fibrosis before implantation.

Given the choice between passing on a life-limiting illness to my children or not, I'd choose the latter every time.

I would like to understand a bit more about the process and how it was developed - so that's a question for Doug smile

DowagersHump Wed 03-Oct-12 17:14:20

The cost argument against is nonsense IMO - the costs involved in treating someone with something like MD or other genetic conditions far outweigh those incurred through IVF

ATourchOfInsanity Wed 03-Oct-12 19:20:05

I think people worry that if we take this step, where would it stop? I read about scientists being able to identify personality traits and possible 'addictive' genes which could go on to gambling/alcoholism and also excessive anger. If we end up asking this question about those traits I think most people would agree to look at the children once born and decide if they have the traits that possibly might turn up; eg, he/she is an angry toddler and has genetics that may suggest anger management issues. Therefore we can start techniques to curb that now while the child is young. It should not veto the embryo being grown.

However with these severe medical disorders that affect life from the get-go, I can't see any difference between this and our ability to do nuchal fold testing for Edwards Syndrome, etc. I think if we are going to weed out one genetic disease that can cause death in infants then really we can't pick and choose which ones if science is able to help parents in this situation.

ComradeJing Thu 04-Oct-12 03:01:58

I also have no issues with this.

Far better to erriadicate devastating diseases than worry about 3 parent daily fAil headlines.

ripsishere Thu 04-Oct-12 06:01:59

Agree with so many people. I can't see how this technique is a bad thing in any way.

Bonsoir Thu 04-Oct-12 07:47:18

Anything that can ensure the conception of a child without an incurable and painful disease is fundamentally to be encouraged. The three-parent argument is a red herring, IMO.

mrsden Thu 04-Oct-12 07:53:05

I have no issues with this in principle, how can it be a bad thing to prevent such terrible diseases? The 3 parent argument makes no sense to me.

How close are we to offering this to couples? Is it still some way off? Are there any problems with compatibility between the donor mitochondria DNA and the other DNA? What research has there been into any long term effects?

We are about to have our first icsi cycle so I'd be interested in hearing more about Susan's work on the impact of using ivf.

SoupDragon Thu 04-Oct-12 07:55:42

I would not have a problem with this technique at all. It sounds wonderful to me. I think the "three parents" thing is a bit over emotional.

Is this so different from any other sort of transplant?

Trills Thu 04-Oct-12 08:27:41

OK, questions:

We already have the ability to screen for diseases before implanting embryos. We now have the ability to change the genetic makeup of the eggs/embryos.

How can we realistically go about drawing the lines between "diseases/features/issues where this should be legal and free on the NHS", diseases/features/issues where this should be legal but not free", and "diseases/features/issues where this should not be permitted at all"?

I'm not asking for your opinion on where the lines should be, I'm asking how we can go about making the decisions in a sensible and pragmatic manner.

climbingkinder Fri 05-Oct-12 16:04:47

I also don't have a problem with the 3 (or 6 as has been pointed out as a possiblity!) parent thing and think being raised in a loving, stable environment is much more important.

My cousin was born with the help of IVF and doesn't have any issues with it as far as I'm aware. I remember her happily chatting around the age of 8 about how she was made in a test tube.

I'd be really interested to know about the impact on families about IVF and other fertility procedures. Did you expect to find any problems when you started the research and have you found any? In the case of an egg / sperm donor, is the "impact" similar to that of adoption, and if it is different then how so?

Do you give any advice to people about how to / when to tell their children?

Thanks

RachelMumsnet (MNHQ) Mon 08-Oct-12 14:25:14

The Q&A is now closed. Thanks to everyone who joined the discussion and we'll be sending the questions over to Doug and Susan and linking to their answers from this thread on 18 September.

Or even October wink

RachelMumsnet (MNHQ) Mon 08-Oct-12 16:28:00

AMumInScotland

Or even October wink

blush you're right smile

RachelMumsnet (MNHQ) Thu 18-Oct-12 17:26:49

The archived Q&A is now ready. Read Doug and Sue's answers to your questions.

gordonpym Sun 21-Oct-12 06:54:32

Of course they should use this technique. What's the use of science or research if not to reduce pain, suffering and death. If it works, go for it!

TheDoctrineOfSnatch Sun 21-Oct-12 23:22:59

Thanks Rachel.

CouthyMowEatingBraiiiiinz Mon 22-Oct-12 00:44:02

What was the success rate of 'standard' IVF when it first started being used? What about ICSI?

Surely if there is a low success rate to start with for this, it's only because the process hasn't yet been refined, and 20/30 years down the line, the success rate will be much higher?

I have friends that would never have had DC's without IVF, and others that wouldn't have without ICSI.

I also have one friend who has had to watch 3 of her DC's die within the first few months of life due to mitochondrial disease. She will not be having any more DC's. If this would give her one more chance of being a parent, without having to watch her baby die, then I am all for it.

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