When you take consent for newborn blood spot (NBS) screening, you need to know about residual blood spots and be able to talk to parents about them. This blog will help you do this.
Residual blood spots
Residual blood spots are dried blood spots that are ‘left over’ after the laboratory punches out several small discs from the blood spots to complete screening. The screening laboratory stores them for a minimum of 5 years.
Laboratories use residual blood spots to check screening results, for testing equipment or methods, and for training and audit. It is a vital part of screening that helps to maintain high standards. If parents consent to screening, they cannot opt out of storage of their baby’s residual blood spots.
Residual blood spots have other potential uses, including health research. Some types of research are permitted without parents giving additional consent. This includes research that uses:
- anonymised samples (no details are linked to the blood spots)
- ‘de-identified’ samples (some information is linked to the blood spots but researchers are not able to identify the person that the sample comes from)
This next bit is very important.
We want to give children the healthiest possible start in life. That is why we offer NBS screening to all babies for 9 rare but serious conditions. In deciding whether to accept screening, parents need to know about every part of the screening pathway – including residual blood spots.
We have evidence that some health professionals taking consent for NBS screening do not discuss residual blood spots with parents. This means parents are:
- not making an informed choice about screening for their baby
- not aware that they must be asked if they consent to future contact about research that could identify their baby
We know that midwives and other health professionals are delivering many aspects of postnatal care at this time and might not prioritise discussing residual blood spots with parents. However, it’s really important that you do so, and feel confident about giving the correct information.
What you should do
When taking consent for NBS screening, make sure that parents understand:
- they are consenting to processes that support the screening programme – this includes storage of residual blood spots for a minimum of 5 years
- residual blood spots can be used to check screening results, for testing equipment or methods, and for training and audit
- residual blood spots can also be used for health research that does not identify their baby
- they must be asked if they consent to future contact about research that could identify their baby
If parents do not consent to future research contact, you must record this in the baby’s notes and in the comments box on the blood spot card as ‘no research contact’. The new blood spot card will have a tick box that acts as a prompt and help you to record this more easily.
You can also find information in:
- Code of practice for the retention and storage of residual newborn blood spots
- NBS programme handbook
- Guidelines for newborn blood spot sampling
To help improve information on residual blood spots we will be:
- reviewing relevant online resources, including e-learning
- adding a new card on residual blood spots to the screening resource cards
- producing training materials on the new blood spot card
- asking those that teach NBS screening to emphasise residual blood spots
We’ll publish another blog when these new resources are ready, probably in early 2018.
If you have any questions about residual blood spots, please contact the screening helpdesk.
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