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NHS uses babies’ blood DNA for secret database

NHS hospitals have quietly created banks of DNA from blood taken from millions of newborn babies without the proper consent of their parents.NHS uses babies’ blood DNA for secret databaseFreedom of information (FOI) requests to hospitals around Britain have established that the blood samples, taken in heel-prick tests to screen for serious conditions, have been privately stored by parts of the NHS since 1984.

According to guidance obtained by The Sunday Times, the DNA can be looked at by police, coroners and some medical researchers. They are able to identify named individuals.

This weekend Andrew Lansley, the health secretary, was under pressure to order an inquiry into why the NHS appeared to have acted without securing proper consent from parents.

Mothers of newborns are given a leaflet that academic experts say fails to make clear the distinction between consent for vital clinical tests to safeguard a baby’s health and for the use of the baby’s DNA in medical research and police inquiries.

Dr Helen Wallace, director of GeneWatch, a pressure group, said: “Giving mothers a leaflet does not amount to informed consent. No one who has just given birth is in a state to understand the full implications of how their baby’s genome might be used in future.”

The standard leaflet simply explains that the stored blood samples can be used “for research to help improve the health of babies and their families in the UK”.

Up to 4m samples are being held at four of the 16 centres licensed to hold newborns’ bloodspots in the UK, according to the FOI responses. More than 700,000 babies are screened each year.

The police and coroners can apply for access to the infant blood samples, which contain individual DNA, to identify people involved in crimes.

Private medical companies and researchers working for the NHS are also able to access the samples, although most of the research is anonymous and done by the NHS after approval by an ethics committee. The bloodspots have been used for genetic research and mass screening for diseases such as HIV in babies’ mothers.

The UK Newborn Screening Programme Centre, which oversees the use of samples, says that some of the bloodspots can be linked to other information, such as hospital admission records, which identifies the individual.

Government guidance says the bloodspots should be kept for at least five years, but hospitals vary widely in their practices.

Central Manchester University Hospitals Trust has 1m samples in storage dating from 1984. About 250,000 further samples are stored in the hospital’s laboratory. It plans to store them indefinitely.

Cambridge University Hospitals Trust retains samples for 18 years. It stores 400,000 samples at Endex archives in Ipswich, with a further 62,800 samples kept in hospital labs.

Great Ormond Street hospital in London began storing samples in 1990 and preserves them for at least 20 years. It screens and stores the samples of about 120,000 babies a year.

It confirmed that it had occasionally handed samples to coroners but not to the police.

Alder Hey children’s hospital in Liverpool, which was at the centre of a scandal over the retention of children’s organs, has 145,000 samples in storage. It receives about 29,000 samples per year. It destroys all samples after five years.

Dr Jane Kaye, director of the centre for health, law and emerging technologies at Oxford University, said: “It is very difficult to get samples like this to do public health screening. It is an enormous resource. But the problem is that this needs to be done properly and with proper consent. At the moment people are not being asked to sign a consent form or make a distinction between what is for their own child’s health and the fact that this may be used for other purposes.”

The samples are taken from babies, aged 5-8 days, to test for conditions such as sickle cell disorders, cystic fibrosis and phenylketonuria.

Shami Chakrabarti, director of Liberty, the pressure group, said that hospitals might face legal claims.

“As someone who gave consent for my own baby to be tested, I’m horrified that anyone would breach my trust, keep my child’s sample for years on end and use it for all sorts of extraneous purposes.

“If they think that thrusting a leaflet in an exhausted new mother’s hand creates informed consent, they can look forward to a flurry of claims under article 8 of the Human Rights Act.

“Liberty is writing to the new health secretary to ask for an urgent investigation.”

From: http://www.timesonline.co.uk/tol/news/uk/health/article7134061.ece

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