Mon, 31 May 2010

Confusing capture and retention

Information capture and retention are two very different concepts that too often get mixed up. Many politicians have appeared particularly confused by these two concepts during the debates on the National DNA Database. Cases where a match happened when the suspect's DNA was loaded were wrongly used to justify retention. Exonaration of innocents was also suggested as another justification for retention when a new DNA sample can always be taken from a detained innocent.

Several articles recently commented on the retention, by parts of the NHS, of blood test taken from babies aged between five and eight days old to screen for serious conditions. Action on Rights for Children (ARCH) explains the issue on its blog: '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.'

NHS Blood Spot Card
NHS Blood Spot Card (image from the NHS website.)

Details on the collection of these blood spots had been included right at the top of the excellent Privacy guide for parents (pdf) prepared by Terri Dowty at ARCH for the launch of the film Erasing David:


What is it? Soon after birth, a tiny amount of blood is taken from a baby’s heel and transferred to a ‘Guthrie Card’ as a series of small spots. These are used to carry out routine checks for any potentially serious health problems. You can get more information here:

In England and Wales babies' blood spots are stored for a minimum of five years. Some hospitals keep them until adulthood.

Will you know it’s happening? Yes, parents are asked for their consent to this procedure.

Pros and Cons: the tests are undoubtedly very important but once you have given consent to any of them, you have no further control over whether the bloodspots are used for other research, nor for how long the Guthrie Card is kept. This is in contrast to many other countries. In Scotland, for example, parents can specify that the Card is only kept for 12 months:

What you can do: If you believe that you should have the option of requesting destruction of the Card once tests are complete, talk to other parents in your area and consider making a joint approach to your MP to raise your concerns.

I haven't found the rate of consent given by new mothers but as this screening is, according to the NHS, 'to identify babies with these conditions early so they can be treated quickly to prevent severe disability or even death' I'd expect it to be very high; new mothers surely want to give the best chance to their babies. According to The Sunday Times, more than 700,000 babies are screened each year. By conflating consent to take the blood samples, to do the tests and to retain the Guthrie Cards, the NHS has strong armed long term retention of these blood samples creating another national DNA database without informed public debate.

Even though the Code of Practice recommends a retention 'minimum of five years as part of quality management', Marie Woolf wrote in The Sunday Times that '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.'

The NHS Code of Practice for the Retention and Storage of Residual Spots complete section on retention explains:

Failure to diagnose an affected child through screening may require investigation by re-testing of the original blood spots and is part of quality management. All newborn blood spots will be retained for a minimum of five years as part of quality management. Retention thereafter will depend on the resources and requirements of the screening laboratory and/or health department.

If there's a need for re-testing, surely another blood sample could be taken from the baby (or child, if several years later). The last sentence of this section is telling, budgets and interest of the labs, not medical condition and privacy of the child are the drivers for retention. The NHS does suggest better rationales: research on anonymised blood spots is useful to monitor the health of the general population, and to develop new equipment and tests and for forensic works. However, even for these use cases, there's no need for long term retention. The only listed rationale that would justify an indefinite retention is to help police identify missing and dead individuals. Not a common occurrence, and one that would require a public debate. As a society do we find this limited benefit justifies a universal blood bank?

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