Designer babies lawful to help sick siblings, UK Law Lords decide

Main Category: Stem Cell Research
Article Date: 29 Apr 2005 - 11:00 PST


Five Law Lords in the UK have ruled that families can legally create babies to help their sick brother or sister, the authority would come from the Human Fertilisation and Embryology Authority, UK.

This ruling is the result of an appeal by the Hashmi family, whose son who was born with thalassaemia major. The Hashmi's say the only hope for their son, who is now six years old, is to create a child with the same tissue type.

Zain (the son) has to have regular transfusions plus loads of medications throughout the day. Thalassaemia major is s serious genetic disorder. Patients with thalassaemia major doe not produce enough red blood cells.

Doctors aim to take stem cells from the newborn's umbilical cord and transplant them into Zain.

Mrs Hashmi was overjoyed with the new ruling, she said "It is nice to know that society has now embraced the technology to cure the sick and take away the pain. It has been a long and hard battle for all the family and we have finally heard the news we wanted to hear."

Making 'designer babies' is a controversial subject throughout the world. Many scientists and doctors say it would cure many sick children. Some worry that this could be the beginning of more ominous things to come.

Information about Thalassaemia
From the NHS, UK

Thalassaemia is a disorder of the blood. Blood contains three types of cells, red cells which carry oxygen from the lungs to the tissues, white cells which act against infections and platelets which help blood to clot. In thalassaemia the white cells and platelets are normal, but the red cells are small and too few in number. It is a form of anaemia. As a result someone with a severe form of thalassaemia gets tired very easily, and needs blood transfusions to remain healthy.

Thalassaemia Major

There are many different types of thalassaemia and many different degrees of severity. The full name of the commonest form of severe thalassaemia is beta thalassaemia major, which affects boys and girls equally. Babies are well at birth, but as months go by they become pale and tired, feed poorly and fail to get on. Blood transfusions restore them to health by correcting the anaemia, but as the transfused red cells are used up, the anaemia returns. So children with thalassaemia major need a blood transfusion every few weeks.

If a child with thalassaemia major is not treated the liver and the spleen in the abdomen becomes very large and the abdomen swells. The heart does not work well. As the years go by, the bones grow abnormally, and the head and face develop a characteristic appearance in severe cases. There are many other complications. Many affected children die as babies, if they do not receive regular blood transfusion.

How does a baby get Thalassaemia?

Thalassaemia is an inherited disease. Each parent of a child with thalassaemia major has a slight change in the blood, which is called thalassaemia minor. This is not really an illness. The red cells are a little smaller than usual, but there are plenty of them and they work normally. People with thalassaemia minor are not usually anaemic. They are not ill and many are unaware that their blood is different from normal in any way. However if two people with thalassaemia minor have children, there is a 1 in 4 chance that the baby will inherit the thalassaemia characteristic from each parent and will get a 'double dose', which causes thalassaemia major. There is a 50:50 chance that the baby will have thalassaemia minor like its mother and father, in which case it will develop normally. There is also a 1 in 4 chance that its blood will be completely normal.

Where both parents are found to carry thalassaemia, it is possible to do a test on the unborn baby in early pregnancy to find out whether the baby is affected by thalassaemia major. This option is fully explained at the time and it is entirely up to the parents to decide whether to take the test or not. As well as this people with thalassaemia are most likely to have other family members who are also carriers of thalassaemia. This means that they too are at risk of passing thalassaemia on to their children. This is a particular problem when cousins marry. So if a person is found to have thalassaemia it is sensible to test other members of the family to see if they are affected, and if they too are at risk of having children with thalassaemia major.

Testing for Thalassaemia

Anyone can be tested for thalassaemia at any time. Women will be offered the test along with all the routine tests in pregnancy. As thalassaemia is inherited, the result of the test will not change throughout a person's life.

Treatment of Thalassaemia Major

Most children with thalassaemia major need blood transfusions every four to six weeks for the rest of their lives. With the regular transfusions, children grow normally, and are able to do all the things the other children do. Unfortunately blood contains iron which the body cannot get rid of naturally. The iron in the transfused cells builds up in the body. After ten or more years, this iron may cause complications which result in poor growth and development, liver and heart disease, and even death.

To prevent these problems, children with thalassaemia major need regular treatment to remove the excess iron from the body. Two drugs are used: Desferral (desferrioxamine) and Ferriprox (deferiprone). Desferral is given by injection, usually under the skin. The injections need to be given every day, usually over several hours, using a special syringe driver (the "pump"). Ferriprox is taken as a tablet every day. Expert advice is needed regarding the choice of drug. Most children have received Desferral in the past. Ferriprox may be more beneficial in some situations. Some patients take both drugs.

In the past before the blood donors were screened other complications of blood transfusion included infections such as hepatitis (inflammation of the liver), caused by viruses. This very rarely occurs nowadays due to better screening for these viruses.

Thalassaemia cannot be cured by drugs, but may be cured by a bone marrow transplant. This is a painful and dangerous treatment, and the patients can die from complications. Bone marrow transplant is best done when a child is fairly young, before the iron build up. However to have a successful bone marrow transplant, there must be a suitable donor who is usually a brother or sister. Many children with thalassaemia cannot have a transplant because they do not have a donor.

Thalassaemia Minor

Thalassaemia Minor is not an illness. Many people have thalassaemia minor and do not know they are different in any way from everyone else. Thalassaemia produces a similar effect on blood tests to iron deficiency and the two are often mixed up. People with thalassaemia minor do not need iron tablets unless they are found to have iron deficiency as well. Women may also become anaemic when they are pregnant, in which case they must consult their doctor for advice on taking iron tablets and improving their iron deficiency. Thalassaemia is found all over the world, but it is most common in the Far East, Middle East and Mediterranean countries, such as Cyprus.

The condition has existed for hundreds of years as it is passed from either parent to their children. It is found all around the world, but is most common in people whose families originate from hot countries. It is thought that it is common because in the past, people with thalassaemia minor were less likely to die from malaria, than non-carriers. Being a carrier therefore offered some protection, which allowed the condition to persist. Today malaria is treated with drugs, so this advantage is no longer important.

Other forms of Thalassaemia

Most of what is described above refers to what the doctors call beta-thalassaemia. However, there are many types of thalassaemia, all of which vary in their severity, and in the effects they produce. The other common type is alpha-thalassaemia, which is described in a separate leaflet.

• Additional
• References
• Citations