Informed choice and public health screening for children: the case of blood spot screening

Objective To examine parents’ and health professionals’ views on informed choice in newborn blood spot screening, and assess information and communication needs. Design and participants A qualitative study involving semi‐structured telephone interviews and focus groups with 47 parents of children who were either found to be affected or unaffected by the screened conditions, and 35 health professionals with differing roles in newborn blood spot screening programmes across the UK. Results and conclusions Parents and health professionals recognize a tension between informed choice in newborn blood spot screening and public health screening for children. Some propose resolving this tension with more information and better communication, and some with rigorous dissent procedures. This paper argues that neither extensive parent information, nor a signed dissent model adequately address this tension. Instead, clear, brief and accurate parent information and effective communication between health professionals and parents, which take into account parents’ information needs, are required, if informed choice and public health screening for children are to coexist successfully.