Bloody database

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.


One Response to Bloody database

  1. This is done in Sweden where by the collection of blood samples of all newborn babies is common practice and used in research. These same blood samples were used to identify the assailant in the case of the murder of Anna Lindh the Swedish foreign minister in 2003.

    When my daughter was born in 2009, I opted out to the saving of her blood sample for use in research. The opt-out was very clearly defined. I had decided before she was born that I would opt-out so it was easy. However as you rightly stated I am sure not many mothers are thinking about these factors directly after birth, it seems quite inappropriate to have to make these type of decisions at this time!

    Best practices in privacy are ‘opt-in’ not ‘opt-out’, its a pity that this example is not followed in the health sector.

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