https://phescreening.blog.gov.uk/2017/08/24/midwives-are-you-discussing-residual-blood-spots-with-parents/

Midwives – are you discussing residual blood spots with parents?

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.

If researchers want to use residual blood spots in a way that could identify a child, they must contact parents to ask their permission. This might be years after screening. When parents consent to screening, they must also be asked if they consent to any future contact about this type of research.

 

Residual newborn blood spots. Image courtesy of Roanna George, Wales Newborn Screening Laboratory.

Current practice

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.

Use ‘Screening tests for you and your baby’ to help you to discuss residual blood spots with parents. NHS Choices also explains the potential uses using real examples.

You can also find information in:

Next steps

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.

PHE Screening blogs

PHE Screening BLOGs provide up to date news from all NHS screening programmes – replacing our previously published newsletters.

You can register to receive updates direct to your inbox, so there’s no need to keep checking for new blogs.

6 comments

  1. Comment by David Shaw posted on

    "If researchers want to use residual blood spots in a way that could identify a child, they must contact parents to ask their permission. This might be years after screening. When parents consent to screening, they must also be asked if they consent to any future contact about this type of research." Why not just ask parents if they consent to future research subject to REC review so researchers don't have to recontact them? That would be less burdensome for everyone and would meet all legal requirements.

    Reply
    • Replies to David Shaw>

      Comment by Christine Cavanagh posted on

      Thank you for your comment. Parents need to give consent to being contacted directly about research that will use the residual blood spot. In the light of the National Data Guardian review of Data Security, Consent and Opt-Out by Dame Fiona Caldicott, we are reviewing the information that we give to parents around the time of birth.

      Reply
  2. Comment by Sheila Skipworth posted on

    I have found this article very informative. The probable reason that midwives do not discuss this issue with parents is that they are unaware of this issue. I am retired now but when I practiced as a midwife I attended a few study / refresher days on blood spot screening including one in London when the scope of the test was increased and I do not recall ever being told about the residual blood spot/ future testing.

    Reply
    • Replies to Sheila Skipworth>

      Comment by Christine Cavanagh posted on

      Thank you for your comment. We are aware that some midwives do not know that residual blood spots are stored by laboratories, hopefully this blog and other measures we are taking will help address this and support discussion with parents.

      Reply
  3. Comment by Carole Garrick posted on

    Will the information for parents in the screening booklet be updated for new mothers to be informed?

    Reply

Leave a comment

We only ask for your email address so we know you're a real person