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As the Hashmis get the nod to create a designer baby, prospects for their ill Zain look up.

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 CURRENT ISSUE MARCH 11, 2002  

THE GLOBAL INDIAN: CONTROVERSY

Should We Play God?

As the Hashmis get the official nod to create a designer baby, prospects for their ill son Zain look up. But a debate on medical ethics gathers steam across the UK.

By Ishara Bhasi in London
FAMILY AFFAIR: Zain(2), Amman(4) and Neesa(17) with their father Amman Hashmi

Three-year-old Zain Hashmi is unaware that he is right in the middle of a controversy on medical ethics which is brewing in the United Kingdom. The medical fraternity, pro-life campaigners and the media are debating the recent approval by the Human Fertilisation and Embryology Authority (HFEA) in London which allows the Hashmi family to create a genetically designed baby that could possibly save little Zain's life.

Zain suffers from beta thalassaemia major, an inherited blood disorder in which his bone marrow cells are unable to produce new blood cells-a process that constantly happens in a normal individual. Currently, the child has to be given an injection every day and blood transfusions in every three or four weeks to keep him alive.

NFEA's approval will allow the Hashmis to make use of the latest in medical technology and stem cell research to create a baby whose genetic match would let him donate crucial cells to his sibling. These cells will replace Zain's diseased cells in his bone marrow and help him lead a normal life. This is reportedly the first such case in the UK that the HFEA has approved.

SECOND BEST: Zain after a blood transfusion at a hospital in Leeds

According to 37-year-old Shahana Hashmi, it has been a living nightmare for her son. Side effects of the routine transfusions afflict the child, such as night blindness, aching muscles, diarrhoea, rashes and swollen legs. Then when he grows older, there is the psychogical aspect of his knowing that he can never lead a normal, healthy life and could likely die early. The HFEA decision gives Zain a new hope for a permanent cure to his condition.

For over a year the Hashmi family has been trying to get a bone marrow match for Zain. None of the other four siblings has the right match. They failed to get any donor from bone marrow donor banks and in despair, even launched their own bone marrow foundation, but all to no avail. Finally, the family decided to seek permission for a designer baby-one that could provide the required bone marrow for Zain.

When approached by the Hashmi family, the Nottingham Park Hospital took up the case and applied for the new treatment licence to hfea. Dr Simon Fishel, director of the Centre for Assisted Reproduction (care), and who applied for the licence on behalf of the Hashmis, expressed happiness that the permission was actually given in the reproductive field. "We are using in-vitro fertilisation (IVF) techniques to screen out this very distressing condition (thalassaemia) and at the same time hopefully offer a cure for Zain."

The parents are obviously overjoyed. But with the approval in their pocket, the Hashmis still have a long process ahead of them before they can finally get the cure for Zain:

# First, Shahana will be given injections to stimulate production of more eggs.

# After about four weeks, the eggs will be retrieved in the laboratory for IVF to be united with sperms from Zain's father.

# When fertilised, the eggs form embryos. One cell from each embryo will be sent to a specialised lab in Chicago for testing. The tests will determine if the embryo is genetically free of thalassaemia and if the tissue matches that of Zain's.

# The lab in Chicago will inform Park Hospital about which embryos are suitable. If none of the embryos is suitable, the entire process will be repeated.

# The chosen embryo will be replaced in the mother's womb. After 16 days, a pregnancy test will be conducted. If the result is negative, another suitable embryo will be introduced. And if there is none, the process will be repeated.

# If all goes well and the mother is pregnant, and the baby is carried to full term (the chances of this are about 30 per cent), when the baby is born, doctors will extract the crucial stem cells from the umbilical cord.

# These cells, which are precursor cells that have an ability to develop in to any kind of adult cells, will be transferred into Zain's bone marrow. Here, they will take on the function of regenerating blood cells, giving Zain the chance of a normal life.

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