ALL SMILES: The Hashmis' endeavour finally pays; Zain (below)

Little Zain Hashmi is unaware he is the subject of a controversy on medical ethics, brewing in the UK among the medical fraternity, pro-life campaigners and the media. Recently, the Human Fertilisation and Embryology Authority (HFEA) in London gave its approval, for the first time in UK, to the Hashmi family to create a designer baby who could possibly gift a normal life to a brother with a blood disorder.

Three-year-old Zain suffers from beta thalassaemia major-an inherited blood disorder in which new blood cells cannot be constantly replenished as in normal individuals. His condition requires him to take an injection every day and a blood transfusion every few weeks to stay alive. According to Shahana Hashmi, Zain's mother, the life-saving treatment has been very tough on the child, with side effects like night blindness, aching muscles, diarrhoea, rashes and swollen legs. Chances of a normal life, even of survival, are bleak in such cases, she says.

The only way out for Zain was to get a bone marrow transplant from someone with a perfect match of human leucocyte antigen (HLA) present in the blood. For over a year the Hashmi family tried in vain to find a match. None of Zain's four siblings fitted the bill and bone marrow donor banks drew a blank. Finally, the family decided to do the unusual-create a baby that could provide the required marrow for its brother.

HEALTH

STEPS TO CURE > Only a bone marrow transplant can cure Zain of thalassaemia. > For this, the HLA of donor and recipient must be identical. > Sperm and eggs from his parents will create embryos, one with the closest genetic match will be carried by the mother. > Stem cells from the umbilical cord will replace Zain's diseased ones.

Using in-vitro fertilisation (IVF), embryos would be formed in the lab and scanned for compatibility with Zain's hla. The embryo that is the closest match to Zain's genetic structure will be implanted in his mother's womb. The stem cells from the umbilical cord after the baby is born will be used to replace Zain's diseased ones.

However, pro-life campaigners are raising moral questions on whether such "designer babies" will end up becoming commercial products. A spokesman for campaign group Life says, "This raises serious questions on how far science should go. Can we allow a child to be manufactured in order to serve the medical needs of an older brother?" However, the HFEA says the decision would not set a precedent.

The treatment will cost the Hashmis £15,000 (Rs 10 lakh). "The IVF and drugs alone cost about £ 2,500 but sending the embryos to the US for tests makes the treatment more expensive," says Wanda Georgiades of the Nottingham Park Hospital which first took up the Hashmis' case and applied for a "new treatment licence" to the HFEA. The Hashmis have entered into contracts with The Mail on Sunday and Trevor McDonald Show to help them cover the expenses.

Meanwhile, the UK Thalassaemia Society has added another dimension to the debate. While welcoming the move as it gives affected couples another option, it denies that thalassaemia is life threatening. Says Elaine Hadari of the society: "People suffering from the disease are living longer but are not cured." But she adds that this option will save thalassaemia patients from otherwise cumbersome methods of treatment.

Procedures like this will not be possible in India as this involves genetic manipulation, which is not allowed nor is research in this field. But hopefully for Zain, life will no longer be painful in the future.