Ban DNA screening of young children, ministers are urged

Marie Woolf,Chief Political Correspondent
Saturday 25 November 2000 01:00 GMT
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The Government's advisers on genetic testing are to urge ministers to ban DNA screening of children for incurable diseases until they are old enough to understand the implications.

The Government's advisers on genetic testing are to urge ministers to ban DNA screening of children for incurable diseases until they are old enough to understand the implications.

A confidential report, due to be passed to ministers early next year, voices serious concerns about the psychological damage done to young people who discover they have life-changing conditions, such as Huntington's chorea, that cannot be treated.

DNA testing is already widely available in Britain and is usually offered to families who have experienced a history of serious disease. In its report, the advisory committee on genetic testing warns that paediatricians should not give in to parental pressure to test children for diseases that run in the family until the child is old enough to understand the implications. "Ministers are seriously concerned about this," a senior Whitehall source said.

The researchers' findings, based on the responses from more than 800 paediatricians and geneticists, show children are often tested for incurable inherited diseases, despite the advice of medical professionals that the DNA results do not necessarily help doctors to improve their health. They said a positive result could hang over a child "like a sword of Damocles" for the rest of its life.

The committee's findings will help ministers draw up guidance for paediatricians and geneticists to ensure there is a "level playing field" for testing.

Many scientists believe that there will be an explosion in the use of genetic testing as the technology develops, including the availability of over-the-counter DNA tests, which are already beginning to be sold in the United States.

But the Government wants to prevent the emergence of anunderclass of people who may not be able to obtain life or medical insurance.

Although accurate screening exists for breast cancer and diseases such as Huntington's,the report urges caution in allowing tests such as cardiac echo and renal ultrasound. A source close to the committee said: "People feel very strongly that testing in childhood is not a good idea. The problem is that people are having this done without the implications for the child being properly considered. The view about carrier and single gene disorders, where no treatment is available, is to leave [children] until they are old enough to decide for themselves."

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