Blood is collected from almost all newborn babies in the UK and stored on blood spot cards. Here are some of the main uses of stored blood spot cards.
Checking screening results and monitoring the screening programme
Blood spot cards are used as part of the NHS Newborn Bloodspot Screening programme. Spots of blood are collected from babies using a heel prick test. These blood spots are tested to find whether the baby has 1 of nine 9 rare but serious conditions. Babies who test positive can be treated early, improving their health and, in some cases, preventing severe disability or even death.
Newborn screening laboratories use stored blood spot cards to monitor the screening programme, including double-checking babies' results if necessary. Laboratory equipment and screening methods are also tested to maintain the high standards of the screening programme.
Investigating the cause of a baby's death
If a baby has died but the cause is unclear, a doctor may request the baby's stored blood spots be tested to try to find the cause of death.
Stored blood spot cards have been used, for example, to find out whether a baby had a genetic condition that may have caused their death.
Providing information about diseases that run in families
In some cases, testing a previous baby's stored blood spots may also provide information about parents' risk of having another baby with a certain condition in the future.
This may lead to tests being offered to other family members to find out if they have the same condition.
Investigating a mother's health
It's sometimes possible to find out information about a mother's health from their babies' blood spots. For example, by testing a baby's dried blood spot, you can tell whether or not the mother has HIV.
Helping us learn more about genetic conditions
The blood spot cards have also been used for research into genetic conditions. For example, in some countries, the spots have been used to find out how many people carry genetic mutations that cause an inherited condition called primary haemochromatosis.
How are the interests of the public protected?
There are a number of ways in which the interests of the public and personal information are protected.
Regulations and laws
Strict guidance exists about who's allowed to access these blood spot cards and how they can be used.
The GOV.UK website has more information about the code of practice to govern the storage and use of newborn blood spot cards.
Under the code of practice, it's recommended the cards be stored for at least 5 years. Laboratory directors store them and ensure the guidelines are followed.
Laws covering the use of the cards include the Data Protection Act 1998, the Health and Social Care Act 2001 and the Human Tissue Act 2004. Guidance on the management of blood spot cards has been developed with careful reference to these laws.
Stored blood spot cards can only be used in research approved by a medical research ethics committee.
When parents are offered newborn blood spot screening for their baby, they are given a pre-screening leaflet and have a discussion with their midwife. This is to help them make an informed choice. Parents are then asked to give consent to screening.
Anonymity and confidentiality
Steps are taken to keep private any personal information contained in, or linked in any way to, the blood spot card collection.
Where blood spot cards are used anonymously, identifying information is separated from the spots before they are tested.
When identifiable blood spots are used for research that parents or patients have given their consent to, steps are taken to protect patient confidentiality.
When the newborn blood spots are collected, parents can choose whether or not they want to receive invitations to take part in this type of research in future.