You may have seen articles in the press about bloodspots taken from newborn babies being kept for years after the event.
Shortly after birth, the baby’s heel is pricked and the blood transferred to a ‘Guthrie card’ as a series of small spots. These are then used to test for diseases that need immediate action, such as Phenylketonuria and Cystic Fibrosis.
As we mentioned in our ‘Parents’ Privacy Guide’, after these tests are completed, the cards are kept at regional centres. A series of recent FOI requests by Genewatch has discovered that the length of time that they are stored is anything from 18-26+ years.
Mothers are asked for consent, but usually don’t realise that if they consent to the tests (and they would be unwise to refuse these) they are also consenting to long-term storage – and in any case, few women who have just given birth are compos mentis enough to think through the issues, so it’s hardly valid consent.
The position is worrying, not only because the police may get a warrant to search the stored bloodspots in order to match DNA – and, on occasion, have done so – but because there have been several noises from government in the past about sequencing a baby’s entire genome and linking it to their NHS record. The ethical and legal implications of doing this are too enormous to discuss here, and have yet to be debated.
In many European countries, the bloodspots are destroyed as soon as tests are complete. In Scotland, the cards are destroyed after one year, unless consent is sought at the end of that period for two years’ further use. We need far tighter regulation in the rest of the UK.