THE Government’s genetic watchdog warned parents yesterday to be wary of genetic tests on their newborn babies.

In a report published today, the Human Genetics Commission says that the genetic profiling of all newborn babies is feasible but is premature and unlikely to be cost-effective for the NHS. But private companies might well offer such a service within the next few years, Baroness Kennedy of The Shaws, QC, the commission’s chairwoman, said. If so, parents should be cautious. “It is far too experimental and the health benefits are far from clear” she said.

There were also fears about tests being used in a discriminatory way, or forced on people who would simply rather not be told. Knowing that a child might develop a disease later in life could have damaging effects on family life, especially if there were nothing that could be done to prevent it.

The commission was asked by the Government to look into the idea of producing, at birth, a genetic profile of every baby that would be used to predict future health problems. With this information, parents might be able to take preventative action, such as controlling a baby’s diet carefully.

The report says that at present such genetic profiling would be too expensive and its predictive ability too limited. But the whole subject should be re-examined in five years, when things may have changed.

The idea is feasible. To list the entire genetic complement of an individual baby — its genome — would at present cost about £5 million. In practice, much more selective screening is all that is needed. Looking at the 5 per cent or so of genes thought to be of medical importance might cost £25,000. Examining only markers known to be important in disease would cost £10,000.

This is still some way from the £1,000 per baby that some people have predicted, but developments in technology could quickly narrow the gap. In 20 years, the report says, it will be feasible to acquire sufficient information from every baby to cover the most important genetic variations.

They could be stored on a single CD-Rom, which would form part of every person’s medical record. A GP could keep records for all his patients on a database, interrogating it to provide information useful in diagnosis and treatment.

The problem, however, is that too little is known about the function and importance of genetic variations to make them really useful. The link between the genes and the diseases is often unclear. That, too, may change, which is why the commission recommends keeping an eye on advances in knowledge.

Sir John Sulston, co-chairman of the working group responsible for the report, said that there are also wider implications, citing issues of consent, non-discrimination and confidentiality. The report says: “If profiling were to go ahead nationally there would have to be comprehensive safeguards around confidentiality and non-discrimination. It would be very difficult to ensure that the information was not misused, possibly leading to unfair discrimination in areas such as insurance, employment and education.”

Risks include people being unable to take out medical insurance if they are carrying a damaging gene.

Helen Wallace, deputy director of the pressure group GeneWatch UK, said: “Genes are poor predictors of most illnesses, so most children would get misleading information.”

Ministers are still basing genetics policy on science fantasy, Dr Wallace added. “Most diseases in most people depend much more on social and environmental factors. Better school dinners are much more important for most children than genetic testing.”

SCREENING NOW AVAILABLE

• Universal screening is available for two conditions, phenylketonuria (PKU), a rare metabolic disorder that if not treated quickly leads to severe learning difficulties, and hypothyroidism, underactivity of the thyroid gland, which if untreated causes brain damage
  
• Near-universal screening is available for sickle-cell anaemia and cystic fibrosis, two genetic diseases whose affects can be reduced if they are detected early
  
• A pilot study by the National Screening Committee is going on into screening for another condition, medium chain acyl-coA dehydrogenase deficiency (MCADD). This is an inherited disease that can lead to death

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