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Friday, 4 February, 2000, 00:41 GMT
Screening failure blamed on race bias

Blood cells Thalassaemia is a disorder of the blood

Half of UK couples at risk of passing a potentially fatal genetic blood disorder to their children are not being offered screening during pregnancy, researchers have found.

They believe medical authorities are wrongly assuming that people from certain ethnic backgrounds would reject the chance to have their unborn child tested for the disease thalassaemia because they oppose abortion.

In fact, early diagnosis allows vital treatment to begin at birth, before the condition causes severe damage to internal organs.

We believe people have a right to information so that they can make an informed choice over something that is terribly important for their family
Professor Bernadette Modell, UK Confidential Inquiry into Antenatal Screening for Thalassaemia
Thalassaemia is an inherited disorder of haemoglobin, the substance in the blood that carries oxygen to the tissues. People with thalassaemia cannot make enough haemoglobin, and because of this their bone marrow cannot produce sufficient red blood cells.

Screening for thalassaemia, which involves a simple blood test, is supposed to be standard practice in the UK.

But the UK Confidential Inquiry into Antenatal Screening for Thalassaemia found services were inadequate and patchy.

Some health authorities had failed to draw up a defined policy on screening, while others had dismissed it as a priority on the grounds that it was an uncommon disease.

The researchers, whose work is published in the British Medical Journal, examined 138 couples in the UK who had experienced a pregnancy affected by thalassaemia between 1990-1994.

They found that in 50% of cases the parents had not been screened, or informed of the implications of the results of screening.

Muslims at risk

It has previously been assumed genetic testing is unacceptable to certain ethnic groups, particularly British Muslims - some of whom are in the high risk group for thalassaemia.

But the researchers found that in fact testing was highly acceptable to all ethnic groups at risk - especially when offered in the early stages of pregnancy.

Lead researcher Professor Bernadette Modell, of the Royal Free and University College London Medical School, said current practice could be described as "institutional racism" as defined by the inquiry into the murder of the black teenager Stephen Lawrence.

"It would fall under that definition on the grounds of unwitting prejudice," she said.

"We believe people have a right to information so that they can make an informed choice over something that is terribly important for their family."

Children with thalassaemia major are normal at birth but become severely anaemic between the ages of three months and 18 months.

Bone marrow transplants are possible for some patients.

The rest are faced with the prospect of blood transfusions every month and overnight infusions of an iron-binding drug using a portable pump for life.

Significant numbers of patients find it impossible to tolerate treatment and die prematurely.

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