UK: Babies' Bloodspots: time to take consent seriously
Terri Dowty of Action on Rights for Children (ARCH) writes:
If you’ve ever had a baby, you will already know about the ‘heel-prick test’. A few days after birth, a small sample of blood is taken from a baby’s heel and transferred to a ‘Guthrie Card’ as a series of blood spots. The blood is then tested for a few rare, serious conditions that need to be diagnosed as early as possible – things like Cystic Fibrosis or Phenylketonuria. An NHS booklet explains this in more detail.
A baby’s mother is asked for verbal consent before the test is carried out, but few people seem to remember much about this, and in any case believe that they are consenting to important tests that will safeguard their baby’s health. They are quite right: these tests really do matter.
The NHS booklet casually mentions, right at the end of the section on bloodspots:
After screening, newborn babies’ blood spots are stored for at least five years and may be used for the following:
- To check the result or for other tests recommended by your doctor
- To improve the screening programme
- For research to help improve the health of babies and their families in the UK. This research will not identify your baby, and you will not be contacted.
In other words, once a mother has given consent, she has no further control over the way in which her baby’s blood sample is subsequently used. She is consenting to two different things simultaneously: to immediate tests and to medical research.
There is no control over the length of time for which the Guthrie Card may be stored. In practice, ‘at least five years’ can mean 18 years, 20 years or indefinitely, as this Times article explained last year.
Read more on ARCH.
This issue is not unique to the UK, of course, as advocates in at least two states – Minnesota and Texas – have also raised objections to the collection of babies’ blood at birth.
These blood tests can easily form the basis for a lifelong database on an individual that includes their biological and genetic information and that can be combined with other databases in the future. All too often, however, new mothers are in no condition to actually consider or object to a request for a baby’s blood sample – particularly if they are naive and believe that the test is only to protect their baby’s health.
There may be valid reasons for data collection and use, but there needs to be limits on collection, retention, and use. No parent should be asked to – or required to – comply with blood collection of their newborn without a full disclosure and informed consent.
Anonymous - February 22, 2011
its a pity that such a situation arose in healthcare. Any data collected comes as a breach in privacy of the newborn. Just because a baby is screened for some rare metabolic disorders Government do not get the right to use the blood samples for their research purpose especially when the intent of research is not clear. How can I as a parent be sure that the research is being done for a constructive purpose and not for the benefit of few high profile companies who would use it as a way of minting more money. If society at large is benefited by such research and some good comes out of it I dont think so any parent would say no to such good deed, but when such invaluable samples gets sold over for a commercial purpose without consent then I don’t see a reason why should I as a parent not raise a question for breach of privacy and misuse of my bay’s sample.
Is government not fooling us? what they are testing for in blood spot can be done by urine test also and that too for as many as 100 disorders. Then why do they need to do a test for only a few disorders by blood?
For any test proper consent should be made mandatory especially when it involves genetic data. Parents should have control of what is happening at every stage. No one should be allowed to have access to such data for commercial purpose.