'Saviour siblings' debate down under

Juliet Tizzard

Progress Educational Trust

22 May 2004

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[BioNews, London] This week's BioNews reports on news that a 'saviour sibling' is to be born in Australia. A couple from Tasmania sought preimplantation genetic diagnosis (PGD) with tissue typing in order to have a second child who would be free from a particular genetic condition, Hyper IgM syndrome. In addition, the couple wanted the new baby to be a matched tissue donor for the couple's existing child who is affected by the same condition. As a result of the treatment, carried out at Sydney IVF, the woman started her pregnancy knowing that her baby will be free from Hyper IgM and will be a potential tissue donor for her existing son.

Just like the two 'saviour siblings' cases in the UK, this couple's actions have prompted a lively public debate in Australia. Representatives of the Catholic church voiced concerns about PGD and tissue typing, because of the destruction of embryos which have the genetic condition or are not a tissue match.

Other organisations, such as the Australian Medical Association (AMA), are supportive of couples like Leanne and Stephen who seek PGD and tissue typing to avoid a particular genetic disease as well as to choose a tissue-matched embryo. However, the AMA is concerned about those who would seek to use PGD for tissue typing alone. 'The decision to have a child should always be made with that individual child's best interests at heart,' said AMA president, Dr Bill Glasson. 'If the intent is to create another child that is disease free and can help the sibling then it could be argued that it is ethically correct. But if the intent is to create an embryo that is compatible with the sick child...then the process has to be questioned.'

And so, for the AMA, the way of assessing the rights and wrongs of PGD and tissue typing is to examine the motivation of the parents. But can medical practitioners or lawmakers reliably assess their intentions? The AMA's support of the Tasmanian couple relies upon the assumption that anyone seeking PGD to avoid a genetic disease in their offspring and to perform tissue typing must be acting in the best interests of their prospective child. This is no doubt true. However, there is no reason to assume that this isn't the case for couples who seek PGD for tissue typing alone. Just because the couple isn't at high risk of having another child with the same condition from which their existing child is suffering, it doesn't mean their motivation is any less caring towards the new baby.

In the UK, the Whitaker family were prevented from having PGD and tissue typing because they sought the treatment for tissue typing alone. But now, the UK's IVF regulator, the HFEA, is reconsidering its attitude towards this issue. Perhaps policy makers in other countries should do the same.

Reproduced with permission from BioNews, an email and online sources of news, information and comment on assisted reproduction and genetics.