Parents must be given the appropriate information on which to make an informed decision to consent to newborn bloodspot screening. HSE Parent Information leaflets are available and should be given to parents during the third trimester of pregnancy and again at the time of sample collection. Hard copies of the Parent Information Leaflet can be ordered here.
Parents should also be given the Top page of the Newborn Screening Card which contains some information about the programme at the time of sample collection.
Parents should be:
- given information on the conditions included in the programme
- told that the conditions are individually rare; following the inclusion of CF the overall risk of having one of these six conditions is approximately 1 in 755. They should be made aware that the CF screening programme may detect a small number of CF carrier; their parents will be offered genetic counselling
- given information on the benefits of screening; early diagnosis and treatment can prevent significant handicap and premature death and for CF early treatment can improve the quality of life by improving nutrition, reduce the number of hospital admissions and may prolong life.
- informed that the newborn screening card is retained, for the benefit of their baby, for 10 years and then it will be disposed of. If the remnant sample is used for further testing, their consent will be sought by the doctor. Residual samples may be used for quality assurance purposes and to develop a new test. If it happens, the sample will be completely anonymised so that no result can be linked back to the original individual. Parents do have the right to request that the blood portion of the card be destroyed after one year. If that is their wish, they should submit a written request to the Director of the National Newborn Bloodspot Screening Laboratory, enclosing proof of identity to include a copy of their passport or driving licence, the birth certificate and a recent utility bill
Parents should be informed of the screening process; they should be reassured that the vast majority of results are normal but that a repeat sample may be requested to check the first result or because of an equivocal result or a technical problem in the first analysis, such as a borderline result, an insufficient quantity of blood collected or assay interference;
Parents of babies with a positive result will be contacted directly, usually by the maternity unit/hospital; clear instructions will be given.
- Depending on the condition, the parents may be asked to bring their baby immediately to hospital, usually to the Children’s University Hospital, Temple Street, where the baby may be kept in hospital for a period of time while treatment is commenced; this is dependent on the condition diagnosed. If the baby is suspected of having CF they will be contacted by a CF Nurse specialist from one of the six HSE designated CF centres and asked to bring their baby in the following day for further tests.