The ‘Saviour Siblings’ Debate

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my-sisters-keeper-movie-posterI haven’t read the book My Sister’s Keeper, but I had heard of it prior to the upcoming movie release. The subject of Saviour Siblings certainly is a touchy one, but also quite fascinating. The release of the movie has sparked quite a debate on the issue as the following ninemsn story tells:

“Imagine your young child has leukaemia, a hereditary cancer or a serious blood disorder. You’re told by your doctor it’s terminal. But there could be a cure. It involves having another child, a saviour sibling, created by IVF as a genetic match for your sick child – a perfectly compatible tissue donor. It’s the subject of a soon to be released movie – “My Sisters Keeper”- starring Cameron Diaz and Alec Baldwin.”

Lizzie Pearl reported the following in a recent account based on the issue of ‘saviour siblings’ in which parents have another child that is a DNA match for their sick child that can act as a donor for them in their life. Dr. Ric Gordon joins TODAY in the studio to give his viewpoint on this issue.

What is preimplantation genetic diagnosis (PGD)/tissue typing?

* Where there is a risk a baby will have a genetic disorder, PGD can be used to diagnose the development of a baby
* PGD involves testing an embryo for a certain genetic condition using IVF, before transferring the embryo
* One or two cells are removed after about five days for testing
* Those that don’t have the specific genetic condition are transplanted into the woman’s uterus
* In this situation those cells that present with the genetic condition looking to be avoided will be frozen or destroyed

The first Australian saviour sibling

* In 2004, the first family undertook the procedure in Australia. They were a couple from Tasmania
* The couple made the decision to help their child suffering from Hyper igM syndrome so their younger child could be a potential tissue donor
* There have been 12 families in Australia that have undergone the procedure to help an older child. They are reluctant to identify themselves

Moral and ethical concerns

* The embryo chosen using this process must be a DNA match for the other child
* Those embryos which aren’t a match are either frozen and kept or destroyed
* The Catholic Church have expressed concern in this debate over the fact that some embryos are destroyed
* The Australian Medical Association says the decision needs to be based on having a second child that is disease free and then may be able to help a sibling – an embryo shouldn’t be chosen purely on the basis that it can help another child

“My sister’s keeper”

* Cameron Diaz’s latest movie, My Sister’s Keeper tells the story of a family that have a daughter with leukemia
* They have a second child that is a match for their first child so she can continue to be a donor for her older sister during her life
* The parents use umbilical cord blood blood for the older sister using IVF to create her sister. They then go on to take bone marrow from the younger daughter to give to her sister
* The parents then need the younger sister to give her older sister a kidney and the girls says enough is enough
* The daughter decides to sue the parents

Dr. Ric says:

* Dr. Ric holds the view that the practice is unethical if embryos are being intentionally destroyed; where there is not specifically an intention of using the embryo
* “I think the ethics of this is that the parents would have to want to have a baby anyway. I can see a reason for having a baby that is free of a particular disease or one that happens to be able to help another child but I don’t agree with having a child for that reason alone”

Dr. Ric on destroying the embryos that don’t match:

* What you are doing is culling an embryo because it’s not a match
* Dr Ric thinks that what you should do is put them all back and subsequently keep them The problem is making embryos for pure destruction. Dr. Ric believes they still have the right to be considered for transfer

Do you practise this in any way?

* No
* We have a problem with having to throw away embryos we don’t use just because we don’t need them anymore. But if they were made with the intention of having that child, that’s where the difference lies.

What about the parents having these children and having them to go on to be organ donors for their children?

* I think it’s abhorrent
* They are too young to make that decision themselves and anything that would put the donor’s life at risk is abhorrent

So lots to take in here. I’m kind of sitting on the fence on this one as there are a lot of issues to get our head around. I can see all sides of the argument, but then again I don’t have a child who is suffering from a deadly disease. It’s very hard to know what you would do if faced with this situation. I would think that natural instinct would be that as a parent you would do whatever it takes to save your child. If that means having a saviour sibling then so be it. But as the parent to the saviour sibling, you also need to consider and respect that child’s needs.

I’m really looking forward to the movie and already have my box of tissues ready.

I know this is such a delicate and tricky topic, but would love to hear your thoughts.

  • Belinda
    July 28, 2009

    I’m on the fence with this one too, both sides of the story have advantages and disadvantages. I finished reading My Sister’s Keeper about a week ago, it was a fantastic read and had me in tears. I cannot wait to see the movie, and yes I’d definitely say bring the tissues!!!

  • susan
    October 17, 2013

    The parents creating saviour siblings can say they wanted another child, but how can you prove they are telling the truth? How would the parents like it if they knew they were only created to be a spare parts machine? All the arguments for saviour siblings focus on the sick child and his or her parents. They totally ignore the emotions, health and human rights of the saviour sibling. The argument that the saviour sibling will feel good knowing they saved the life of their sibling is wrong. What if the saviour sibling died during a procedure? What if the sick sibling dies anyway? The saviour sibling will feel responsible for the death of his or her sibling, the saviour sibling will be resented by his or her parents and other family members. And on top of that, they would have to cope with the fact that they were only created to be a spare parts machine.

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