Thousands of babies had DNA stored on NHS database which police could access
More than 10,000 babies in Leicestershire had their DNA stored on an NHS database last year without the proper consent of their parents, it has been claimed.
Blood samples are taken from newborn infants around the country in routine heel prick tests to screen for serious health problems.
But it has emerged they are banked in databases for years by hospitals, and could be accessed by police looking to identify criminal suspects.
Medical researchers can also gain access to them, prompting concerns that a national DNA database is being created by the back door.
Mothers are given leaflets explaining their child's blood will be stored for "at least five years", but campaigners say parents are not being properly informed that some hospitals are holding samples indefinitely and that they might be used in police inquiries.
Dr Helen Wallace, director of pressure group GeneWatch, said it was important for mothers to agree to the tests for the benefit of their children's health.
But she said parents were not being asked for "fully informed consent" – and said new mums were not always in the best position to take in information about the storage of their child's DNA.
Dr Wallace 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.
"There are companies with a commercial interest in sequencing genomes – we don't want that to happen without parents being aware of what's going on."
Shami Chakrabarti, director of Liberty, has raised concerns and has written to Health Secretary Andrew Lansley to ask for an investigation.
The Department of Health said there were "strict safeguards" in place.
It added that on the "very rare occasions" when police wanted access to the samples, they would have to get a court order. The department said parents were "well informed" about screening and sample storage.
Figures from University Hospitals of Leicester NHS Trust show that between 10,000 and 11,000 infants had the heel prick test last year.
Parents who agree to the test are automatically agreeing for the sample to go on the database.
A spokeswoman for the trust said mums were given leaflets before and after birth.
She said: "Very few parents decline the test for their child."
The trust would not comment further.
Sir Peter Soulsby, MP for Leicester South, said: "It's right that mothers are made fully aware that the data may be stored, but on the other hand it's important that health authorities are able to take and screen these samples.
"What matters is that we are aware of the potential for abuse and put in safeguards to avoid it."
The blood samples, which are taken from babies aged five to eight days, are tested for conditions such as sickle cell disorders and cystic fibrosis.
Samples taken in Leicestershire are sent to a centre at Sheffield Children's Hospital.
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by skanxz, Melton Mowbray
Tuesday, July 13 2010, 11:23PM
“My wife was asked to sign the form when she was trying to breast feed and was told it was just to test for vitamin K deficiency, nothing about DNA.
I came across this article whilst reading another article about 10 ways we are being tracked, traced and databased on nwoobserver.wordpress.com . Storing DNA on its own may not seam too bad to some, but when you look at all the other information that is being gathered about you then it starts to get a bit too much. The Police store your movement through number plate recognition, mobile phone companies not only store information about calls you have made but also the location of your phone at any given time even when switched off. The list goes on. Ever heard of 'Public sound surveillance' now being launched in Europe to monitor conversations in the street.
What if they find out that if you have a certain gene there is a 90% chance you are going to commit crime, would you still want your DNA on a database.
This has got to stop before it is to late. We are loosing our freedoms and privacy in the name of security. Do you want to live in a surveillance society.
In the last ten years we have had 1 terrorist attack. We used to have a lot more in the past when the IRA were bombing the mainland but life went on and we were not scared.
Crime is no worse today than in the past. It just gets reported more and the media hype it up out of all proportion.
In some European countries you are guilty until proven innocent. Is that what you want.”
by Steve B, Countesthorpe
Friday, July 09 2010, 12:55PM
“How about if an extremist party managed to find themselves in power?Imagine how handy a DNA database would be if they decided to do a spot of ethnic cleansing.”
by Cicero, Leicester
Thursday, July 08 2010, 8:45PM
“"The only people who have anything to fear from having their DNA on file are the criminals."
Not true. DNA evidence is not as reliable as the lay person believes.
Transference and contamination, and issues over testing methods are just some of the problems.
In any event, it's worth bearing in mind that identification by DNA is expressed in terms of probability and not in terms of certainty.
DNA evidence is a useful tool but to catalogue an entire nation is overkill in the extreme - the potential for harm outweighs the potential good by far in my view.”
by Avtar, Oadby
Thursday, July 08 2010, 4:38PM
“Is DNA science as infallible as climate change science?”
by CGLee, near Melton
Thursday, July 08 2010, 4:29PM
“I'm sorry, Jane, but your argument does not hold up. If your DNA proves that you are resposible for an offence then there is no argument. Of course, other evidence has to be considered as well, but the discovery of DNA profiling is the greatest tool to crime detection since fingerprints were discovered in the 19th century.
My only argument is that the storage of DNA has to be done fairly. On that point I have already explained my position.”