Babies' DNA secretly stored in NHS database

The DNA of up to four million newborn babies is being stored in UK hospitals without proper parental consent.

Mothers are informed of routine heel-prick tests given to their newborn babies and are supplied with a leaflet explaining the future storage of these blood samples. The samples are used to test for serious medical conditions such as cystic fibrosis and sickle cell anaemia, however, they can also be accessed by the police, coroners and medical researchers.

The samples have been used in genetic research, without revealing the identity of the baby from which the sample came. However the samples can be connected to a specific individual through the use of hospital admission records. A Department of Health spokesperson said: 'There are strict safeguards in place that protect the sample once it is taken. On very rare occasions the police may request access to a particular sample. To be granted this access they must have a court order for a specific individual sample in a specific case'.

Government guidelines suggest these samples are kept for five years before they are destroyed, as is the case in Alder Hey Hospital in Liverpool, which is holding approximately 145,000 of the four million samples in question, according to Freedom of Information (FOI) Act requests. However Central Manchester Hospital, holding the largest amount of samples, numbering approximately 1.25 million, intends to keep these samples indefinitely.

'We do not want to put mothers off having these tests as they are very important for their babies' health, but the key issue really is how long these samples are being stored for. Some hospitals are hanging onto them indefinitely', said Dr Helen Wallace of Genewatch.

Shami Chakrabarti, director of the pressure group Liberty, said: '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'.

Dr Jane Kaye, Director of the Centre for Health, Law and Emerging Technologies at Oxford University emphasised the importance of these samples, when stating: 'It is very difficult to get samples like this to do public health screening. It is an enormous resource'. However she went on to say that sample procurement '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'. Liberty is currently requesting a formal investigation by Andrew Lansley, the new Secretary of State for Health.