Parents of newborn babies unaware of bloodspot screening consequences, report shows
11 October 2017
A team of University of Manchester researchers - including Rebecca Bennett, Professor of Bioethics in the School of Law - have found that changes are urgently needed in how parents are informed about newborn bloodspot screening in order to improve their understanding of its consequences.
The research, funded by the National Institute for Health Research and led by Dr Fiona Ulph, suggests that cost-effective changes could be made which would ensure parents are better informed.
Newborn screening, one of the top public health advances of the developed world, involves taking a blood sample soon after birth. It enables the diagnosis of nine serious conditions, including cystic fibrosis and sickle cell, meaning that any required treatment can begin immediately.
However, the information that has to be presented before screening is complex.
Research found that both parents and midwives agreed on how to change practice to improve awareness. The key suggested changes involve:
- When information is given - Ensuring parents are given information about screening for their baby in the third trimester, so they can think about it and ask questions before the birth.
- How information about screening is given - Using a greater range of more innovative materials to inform parents than just one lengthy booklet, such as via group appointments or clinic waiting room TVs.
- What information about screening is given - Although midwives and parents agreed on what information parents needed to know, the current order of the messages leads to the information being seen as not personally relevant. Primarily, parents need to know they have a choice about screening.