Mumsnet has not checked the qualifications, experience, or professional qualifications of anyone posting on Mumsnet Talk and cannot be held responsible for any advice given on the site. If you have any serious medical concerns we would urge you to consult your GP.

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.

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.

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

Thanks Rachel.

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!

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.

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

AMumInScotland

Or even October wink

blush you're right smile

Or even October wink

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.

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

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.

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?

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.

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.

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.

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.

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.

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

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

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.

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.

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

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

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.

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 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?

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.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now