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Friday, 2 August, 2002, 09:09 GMT 10:09 UK
Q&A: 'Designer baby' refusal

A family desperate to create a baby which could save the life of its elder brother have been turned down by a fertility treatment watchdog.

The Whittaker family from Bicester now plans to go to the US to seek "tissue typing" treatment.

Yet earlier this year another application for a similar procedure was allowed to go ahead.

BBC News Online examines the contrasting cases.

What do the latest couple want to do?

Michelle and Jayson Whittaker already have two children, including a son called Charlie, who is three.

He has a blood disorder called Diamond-Blackfan anaemia, which means he needs painful daily injections to keep him alive.

There is only one cure for the condition - a transplant of "stem cells" from a matching donor to kick-start blood cell production.

This could be taken from the umbilical cord blood of a matching baby.

However, neither of his parents, nor his sister, are matches.

Any child conceived naturally by Michelle and Jayson has a one in four chance of being a match.

To improve the odds, they want to conceive a child using an embryo screened to make sure it is a match.

What is the technique involved?

Science is now able to help the Whittakers.

In IVF, a number of eggs, perhaps as many as 12 or more, are taken from the woman and fertilised with her husband's sperm

Some of these will start to grow into embryos.

After a few days, there will be a small bundle of cells.

One of these can be taken out - without harming the embryo - and genetically tested to see if it is a match for Charlie.

Then doctors can reimplant only the embryos which match, ensuring that any baby born will be able to help Charlie.

This sounds a bit like creating a baby for spare parts. Is that legal?

If the treatment comes from the umbilical cord of the baby, then there is no legal problem, as this is normally discarded anyway, and its use would have no effect on the infant.

However, if, in future, doctors wanted to use, for example, a newborn's bone marrow to treat a sibling, then this raises serious legal questions, and would need to be tested in court.

For many people, this would be far less acceptable - would it be in the best interests of the baby for the parents to offer consent for such an invasive procedure?

What are the chances of success?

The problem with embryo selection is that it reduces the odds of IVF success by ruling out three out of four embryos produced by doctors.

This means that even if two matching embryos are created during a cycle of IVF, they may not be the ones normally chosen by embryologists as most likely to implant and develop normally.

However, Michelle is relatively young, at 29, which swings the odds back in her favour.

It may however, be a race against time.

Doctors think Charlie should have the stem cell transplant within the next 18 months - or it may be less likely to work properly.

This means Michelle only has nine months - perhaps only three or possibly four cycles of IVF, in which to get pregnant.

Why can't they just go to clinic in the UK and get the treatment done?

In the UK, the use of embryos is strictly regulated by the Human Fertilisation and Embryology Authority (HFEA).

Clinics wanting to carry out this procedure have to apply to the HFEA for a licence to do it.

On Thursday, they refused such a licence to the London clinic which wants to treat the Whittakers.

Wait a minute. Haven't they just given permission for someone else to do exactly the same thing?

A clinic in Nottingham was given a licence to treat Shahana and Raj Hashmi, whose son Zain has thalassaemia.

Exactly the same technique is being used to "tissue type" the embryos for a potential match.

However, there is a key difference in the eyes of the HFEA.

The cell taken from the Hashmi's embryos is also being tested for signs of thalassaemia - to make sure the new child does not carry the same disease.

There is no genetic test for Diamond-blackfan anaemia, because scientists do not yet know what genes cause it.

Even if there was, there is thought to be only a one in 50 chance of the Whittakers having another child with the illness, so they would not be good candidates for this type of "pre-implantation genetic diagnosis".

The HFEA has said that the primary reason it allows "embryo selection" is to avoid serious disease in the resulting child.

If the same cell taken out to test for illness can also be tested for a tissue match, it says, that's fine.

However, no genetic diagnosis means no reason to take a cell in the first place, so no tissue typing, it says.

Naturally, this argument has been attacked by both the Whittakers and the clinic wanting to carry out the procedure.

They say that the earlier decision effectively sanctioned the principle of tissue typing, and the new ruling is illogical.

So what happens now?

Time is of the essence for the Whittakers.

They could fight on through the courts, but any victory would be hollow, as the delay would probably mean any transplant would be ineffective.

So they plan to go to the US, where this treatment is readily available.

The ruling leaves the HFEA policy on tissue typing still unclear, and similar applications to the authority are expected over the coming months.

However, a court challenge by a pro-life group on the decision to allow the Hashmis to go-ahead, could clarify the situation, either banning the practice of tissue typing altogether, or offering a platform for couples to challenge the current HFEA position.

See also:

18 Jul 02 | Health
24 Feb 02 | Health
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