• Question: do you think ity is right to crrect and chage abnormalities in in the genome which cause congenital disorders in the embrio?

    Asked by wiseowldunnemiaow to Nick, Carla, Vicky on 15 Nov 2013.
    • Photo: Nick Groves-Kirkby

      Nick Groves-Kirkby answered on 15 Nov 2013:

      This is a really interesting question. Research scientists often focus on whether or not we can do something, and let other people worry about whether it is ethical and right.

      At the moment, potential parents who might carry damaging genes such as those that cause muscular dystrophy can be tested, and can consider the test results when planning a family. I happen to know that I carry one of these genes, and it will be something I have to think about when I have children. One possible solution is to use IVF technologies to ensure embryos don’t inherit these genes.

      I was at a meeting last week where we talked about this kind of thing. Something we talked about in particular was doing genetic testing on foetuses themselves. This is becoming far easier, and we were concerned it could lead to more parents choosing to abort their pregnancies if they thought there might be anything wrong with their children. Unfortunately, it’s likely to be easier to abort the foetus and try again that it would be to correct any abnormalities at this stage.

      My personal view is that we should use whatever information we have before conception to try to make sure children are as healthy as possible. Ultimately though, we have to leave these decisions up to the parents, and we can’t force people to do things they don’t want to do. There have been interesting cases of deaf parents who have argued that they want to have deaf children because (I believe) they want them to share the same culture. Not everyone has the same idea of what is normal and healthy!

      After conception, once the foetus is formed I think we should tend to not interfere unless there is overwhelming evidence that the child’s quality of life will suffer. I think we test for Down Syndrome at this stage, but not much else at the moment. Again, any decisions have to be left to the parents. I don’t think we should be telling people what kind of children they can and can’t have.

      This is a long answer, so well done if you made it this far! It is a very complex issue though, and I don’t think there are any easy answers!

    • Photo: Vicky Forster

      Vicky Forster answered on 17 Nov 2013:

      Hi wiseowl,

      Excellent question. I think Nick has already done a very good answer, so i’ll just add a few points. What a lot of people don’t know is that the mother’s body already has a system in place to detect ‘faulty’ embryos – and many are aborted automatically by these ‘checking systems’ if they are discovered to be faulty. What we see in things like Down’s syndrome, is this system failing to pick up the fact that the embryo is abnormal. In Down’s syndrome, this is because there are too many chromosomes, so the ‘checking system’ sees two normal chromosomes, and doesen’t pick up that there is an extra one. If it was a case of only one chromosome 21 being detected, the mother’s body would probably detect this and abort the foetus. This often happens before the woman even realises she is pregnant. So, your question refers to whether we should artificially interfere with genetic abnormalities, when the mother’s body fails to pick them up and abort the faulty embryo. My opinion is a universal yes. We should use medicine wherever we can to ensure that people can lead healthy lives, and this should not only be restricted to after they are born, if we can indeed do something about this before they are born. There are different degrees of disability that can result from genetic disorders as I’m sure you know. There is Down’s syndrome – where people often have learning difficulties, a shorter lifespan and a high risk of developing leukaemia in childhood – but many people believe that these people can have an excellent quality of life, and enjoy their lives. Some babies with congenital disorders however only live for a matter of hours after birth, potentially in great pain and discomfort. Is it morally right for us to allow these babies to be carried to term, when we know they have no chance of living and can detect this early in the pregnancy? It’s a question of medical ethics, which i’m no expert on – but it’s a very important topic in medicine and governs what researchers like myself and Nick do.

Comments

  • Photo: Werner

    Werner commented on :

    I think it would be extremely dangerous to try to change the genome. If you look at individual cases even not all congenital disorders are in the parents genomes but are for example due to medication during pregnancy or other environmental factors.