There has been some inaccurate media coverage regarding the Newborn Screening programme. The following statement has been issued by the National Newborn Screening Centre.
This document sets out to explain:
- What the newborn blood spot screening programme is for
- How parents are informed
- Why samples are stored securely
- How possible future research use is explained to families
- How families can express an opinion about research
- The code of practice
- The very limited set of circumstance the cards are released to third parties (outside research it requires a court order)
- Research is either completely anonymised or individually consented
- Benefits of the research
Information for parents and health professionals from the Newborn Bloodspot Screening Programme in the light of recent media reports regarding the storage and use of screening blood spot cards
The newborn blood spot screening programme is a very successful and important NHS screening programme which tests all newborn babies so that those with rare but serious conditions can be identified. This allows babies to be referred immediately to specialist paediatricians so they can benefit from starting treatment and other management as early as possible to enable them to lead full and healthy lives.
In England last year (2008-2009) 676,779 babies were screened and approximately 1,200 babies were identified with one of the five conditions for which screening is offered.
How parents are informed
Mothers-to-be receive written information about the screening tests offered during pregnancy and again after their child’s birth with opportunity to discuss with their midwife and ask questions during pregnancy as well as before the test so that they can make an informed choice about screening.
Secure storage
Blood is collected from a heel prick and dried as blood spots on filter paper cards. Parents are informed that, after testing, these cards must be stored for at least five years for quality control of this nationwide screening programme. They are stored securely by the NHS newborn screening laboratories responsible for the tests.
Research and public health uses of cards
At the time of the test, the midwife explains the research and public health uses of the blood spots to the mother and gives her an opportunity to decide whether she wishes to receive information about future research studies. Her decision is recorded on the card.
Use of the cards for research or public health studies is governed by a strict code of practice published in 2005. This code of practice was developed following a wide public and open consultation and is published on our website http://newbornbloodspot.screening.nhs.uk/cms.php?folder=2547 along with more detailed information
http://newbornbloodspot.screening.nhs.uk/FAQs
Blood spot cards are not released to commercial companies or to insurance companies.
Cards can only be released to the police on receipt of a court order for a specific dead or missing person. The card of a person who is alive and not missing is not released.
Approval for research and public health studies
Research is carried out on completely anonymised cards. If not anonymised - consent has to be sought from parents or with approval obtained from the National Information Governance Board Ethics and Confidentiality Committee. Blood spot cards are only released by the laboratories for research that has been approved by a research ethics committee and, if appropriate, the National Information Governance Board.
Benefits of research
The use of bloodspots for research has benefitted countless children with rare or uncommon conditions. Major advances include the development of tests to identify MCADD, a life threatening condition that is now offered as a screening test to all babies born in England.
Contact information:
GOSH-ICH Press Office: 020 7239 3125
Email:
Coxs@gosh.nhs.ukFor genuine and urgent out of hours call speak to switchboard on 020 7405 9200
