The Global Indian

THE DEBATE The Americas Genetic manipulation is allowed only for therapeutic purposes. Research and clinical investigation must meet guidelines laid down by the Chicago-based American Medical Association. THE UNITED KINGDOM Approval for PGD is required from the Human Fertilisation and Embryology Authority, an arm of the government. INDIA The issue is stillborn. "It is a policy decision not to allow research on the human genome," says Dr. Manju Sharma, secretary, Department of BioTechnology.

Using this technique, Zain will have an 80 per cent chance of a match being found, compared to 20 per cent from a brother or sister conceived naturally. But even as the Park Hospital and scientific circles remain enthusiastic, pro-life campaigners are bitterly critical. Is the child to be created a mere medical commodity produced to save its brother? Will this decision pave the way for designer babies who will be produced for spare parts?

The technology is also controversial because it involves screening of embryos, some of which will be discarded if they do not contain the right genetic code-although unused embryos are discarded after virtually every IVF cycle.

A spokesman for the campaign group Life said: "This case raises serious questions as to how far we should allow science to go. Should we allow a child to be manufactured in order to serve the medical needs of an older brother?" He added that while the term 'designer baby' is often overused, it is appropriate in this case. Zain Hashmi's condition-beta thalassaemia major-is a serious genetic blood disorder, he stated, adding: "We understand his parent's request to use technology in this way. But there are other lives to consider: Zain's sibling, who will have to live with the knowledge that he/she was created to supply bone marrow and the extra embryos that will be created and discarded in the course of IVF procedures."

Dismissing criticism that the designer babies will become commercial products, HFEA said that the decision would not set a precedent and each case would be considered individually. Such treatment will only be allowed after full, detailed consideration by the authority and under very strict controls, it added.

The Park Hospital has already received over a dozen calls from couples unable to find matches from donor banks for children who are suffering from life-threatening diseases.

Wanda Georgiades, spokesperson at the Park Hospital, said: "There are 12 other couples who have expressed an interest because they cannot get a match from the donor bank. At the moment the embyros have to be flown to Chicago because we do not have the technical facilities here but I am confident that soon we will have them." The cost of the entire procedure for the Hashmis will run into £10,000 to £15,000. "For IVF treatment and drugs alone the cost comes to about £2,500 but having to send the embryos to the USA for tests makes the whole treatment more expensive," says Georgiades.

The couples that are lining up are at the beginning of the process with no guarantee they will all proceed. She said: "The process that the Hashmis went through included extensive medical and scientific consultation. The couples hoping to follow the Hashmis would also go through consultation and counselling on the implication of their decisions." However, she is positive that once the required facilities are available in the UK, the total cost will be reduced.

The Hashmi family has gone on a contract with The Mail on Sunday and Trevor McDonald Show which might help them foot the high bills. But the cost here would work out less than required in repeated blood transfusions for Zain, and will also ensure him a healthy life if all goes well.

Dr Ajai Singh, a general medical practioner for 20 years in the UK, has welcomed the move saying that screening of embryos will offer couples a cure for children suffering from inherited diseases and also allow them to have babies without certain medical problems.

The UK Thalassaemia Society too has welcomed the move as it gives couples a choice, though they do not perceive the condition to be "life threatening". "We have members who are in their 50s, are married and have children. More and more people suffering from thalassaemia are living longer but they never get cured. The new treatment will definitely cure the disease and a patient will not have to take blood transfusions and go for iron chelation four to five times a week for life," said Elaine Hadari, spokesperson of the society.

But where will the medical fraternity draw the line between who should and who should not be allowed to go for pre-implantation genetic diagnosis (PGD) and designer babies? What kind of control will be implemented? As Singh ponders, if the treatment gets a commercial go ahead, people will go for designer babies where the choice will be: should we go for a blue-eyed, blond baby boy or a green-eyed, red head baby girl? But, he adds, "Once it is permitted and becomes less expensive, it can be exploited."

The Hashmis, however, are not the first couple to go for PGD. In the UK, this technique has been used before, resulting in 20 bonny babies who would otherwise have been at great risk of inheriting serious diseases. But these cannot be called designer babies as they were not created to save another life. Zain's case is a dramatic shift in the British attitude which indicated concerns that a designer baby would be viewed as a commodity-not a person in her or her own right.

This attitude found voice when the world's first designer baby, Adam Nash was born in the USA. In an interview with BBC Online, Dr Vivienne Nathanson, the head of ethics and policy, British Medical Association, suggested that the technique should not be allowed under British law because of the possibility of the child simply being seen as a medical product.

Two years ago, Lisa and Jack Nash had created Adam, who donated stem cells from his umbilical cord to his older sister, Molly, to replace her failing bone marrow. Molly was born with Fanconi anaemia, a genetic disorder leading to failure of bone marrow production. When trying for the Nashs' second child by IVF, doctors used PGD to select a healthy embryo that did not carry the disease. Lisa Nash underwent four IVF cycles before becoming pregnant and each time the embryos were screened to eliminate those carrying the Fanconi anaemia gene. The doctors also selected an embryo which would produce the tissue match necessary to offer Molly the chance of a bone marrow transplant.

Zain's disorder is different, but it too puts limits on the life he will lead. But even as steps for his cure begin, the debate on the ethics of designer babies rages on.

-inputs by Prerna Singh in Delhi