Blood brothers: how newly born Jamie offers hope to Charlie

'Designer baby' controversy rages after couple circumvent British laws on embryo selection to help son beat his life-threatening illness
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Indy Lifestyle Online

The birth of every baby is an emotional moment for the parents, but the delivery of 7lb 10oz Jamie Whitaker at a Sheffield hospital on Monday resonated far beyond his close family.

As Michelle Whitaker, 31, cradled her new son in her arms, her husband, Jayson Whitaker, 33, found the words to describe their extraordinary situation. "When I held him, it was like I was holding UK history and my son at the same time. It is an amazing feeling after all we have been through."

Jamie is the first baby born to British parents whose embryo was deliberately selected during IVF to provide a match for his older brother Charlie who suffers from a rare type of anaemia. The siblings were pictured on the front of yesterday's Daily Mail, which paid an undisclosed sum for the story, under the headline: "The designer baby created to save his brother's life."

The birth has already caused controversy over the ethics of producing a "saviour sibling" - one born for the benefit of another. Blood extracted from Jamie's umbilical cord, which is rich in stem cells, will be kept for later transfusion into Charlie and represents the four-year-old's only hope of a cure from the rare disease, Diamond Blackfan anaemia, that is otherwise expected to kill him in early adulthood. In the meantime, Charlie has to have regular blood transfusions and daily injections to keep him alive because his body does not produce enough red blood cells.

The Human Fertilisation and Embryology Authority (HFEA), which licenses IVF clinics in Britain, refused permission for the Whitakers to have the embryo selection procedure in the UK because, they said, it was wrong to expose the baby to the possible risks associated with pre-implantation genetic diagnosis (PGD), in which a single cell is removed from the developing embryo for testing. So with the help of their British specialist Mohammed Taranissi, the director of the Assisted Reproduction and Gynaecology Unit in London, the Whitakers travelled to Chicago where PGD for tissue typing was carried out.

There, two embryos selected to give a 98 per cent match with Charlie's tissue type were selected and replaced in MRS Whitaker's womb last November, with one surviving. She returned to Britain to complete her pregnancy and Jamie was born at the Royal Hallamshire hospital, Sheffield, at 37 weeks.

Last year, shortly after Mrs Whitaker became pregnant, her husband, a manager with an energy company, explained why they had taken the step of travelling 6,000 miles for treatment. "We were always determined that we would get what we wanted somewhere. All we were doing was taking IVF one step further - taking a tiny cell out of a tiny embryo to see if it matches Charlie's tissue. Most people who have children would do the same."

This week they had their reward. Mrs Whitaker said: "When I first held him I could not believe it, he was so beautiful, I cried. There are hundreds of reasons for bringing a child into this world.

Mr Whitaker added: "Some people have a second child to give the existing sibling a brother or sister. We have always wanted to have four children, so we just combined having more with helping Charlie." The couple also have a 23-month-old, Emily, but she is not a match for Charlie.

They now face an agonising wait to find out whether Jamie is affected by the same condition as Charlie. Diamond Blackfan anaemia is extremely rare, affecting an estimated 600-700 children and adults in the world. The chances of it occurring in the sibling of a sufferer were estimated at 3 per cent by Dr Lana Rechitsky, of the Chicago Reproductive Genetics Institute, where Jamie's embryo was selected and implanted. It may be six months before tests show whether he is affected.

Although the condition can be inherited, it also occurs sporadically and there is no genetic test for it at the embryo stage. This, in the eyes of the HFEA, was the crucial distinction between the Whitaker's case, and that of Raj and Shahana Hashmi, who were given permission for IVF treatment to help cure their four-year-old son, Zain, who is seriously ill with a rare genetic blood disorder.

In the case of the Hashmi's, who are currently having treatment, pre-implantation genetic diagnosis (PGD) is used to eliminate those affected by the disorder. At the same time, tissue typing is carried out to ensure healthy embryos are a match for Zain. But in the Whitaker's case the only purpose of PGD was to ensure a match with Charlie, not to prevent the birth of a another child with the same condition.

Suzy Leather, chair of the HFEA, said yesterday that the long-term risks of PGD were unknown and it was therefore only appropriate where there was a significant risk to the resulting baby if it were not carried out. "If there are benefits for the child to be created from the [tested] embryo, for instance, to avoid a significant risk of a serious disease, then I think the balance of potential harm and potential good falls in a different place than if you are simply [testing] an embryo for the benefit of another person.

"We don't know what the social and emotional consequences of being a so-called 'saviour sibling' will be. It seems to me that in this area of considerable uncertainty, where there is a possibility of theoretical risk, that we should adopt a precautionary approach."

Anti-abortion groups who, unusually, find themselves in agreement with the HFEA on this issue, warned that the process would lead to the commodification of children and could be the start of a slippery slope that will end with parents choosing skin colour, gender and other physical or intellectual attributes.

The British Medical Association backed the Whitakers against the HFEA yesterday. Vivienne Nathanson, head of ethics and science, said: "As doctors, we believe that where technology exists that could help a dying or seriously ill child, without involving major risks for others, then it can only be right that it is used for this purpose.The welfare of the child born as a result of the treatment is of crucial importance, but in our view this is not incompatible with allowing the selection of embryos on the basis of tissue type."

Members of the HFEA, caught between the demands of desperate parents and a public fearful of allowing science to rampage ahead, were cautious yesterday about becoming involved in the controversy. The head of one leading London fertility centre, who sits on the authority and asked not to be named, said there was one question to be put to those who supported the Whitakers.

He said: "What if the new baby had been selected to help the father, rather than his four-year-old brother? And why does that make you feel uncomfortable?"

The ethical world

Britain probably has the most permissive laws on embryo research in the world, but they are carefully policed.

The Human Fertilisation and Embryology Authority (HFEA) was established in 1990 and it has since become the model that many other countries have tried to adopt.

Even though there are now calls for the 1990 Act to be redrawn because of advances in embryo research, most infertility experts accept that the HFEA is the most appropriate organisation to deal with the ethical dilemmas posed by advances in IVF, cloning and stem-cell research.

In the US, the laws governing embryo research are generally considered to be a mess, with regulations varying from state to state. No US government funding, for instance, can be spent on research using embryonic stem cells, unless they were already derived from private clinics. But there is virtually no American legislation on human embryology and IVF covering private clinics and research institutes.

In France, research has been paralysed because the law allows scientists to observe embryos in the test tube only if it can be shown to be for the benefit of those embryos. In Germany, there is a total ban on embryo research, yet scientists are allowed to import embryonic stem cells from other countries.

In China and other countries in the Far East, there is little or no regulation, leading to speculation that some scientists there are involved in cloning experiments.

Steve Connor

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