Consent

Three meetings of the consent expert group were held in 2003/2004. They included valuable input from the Department of Health, the National Patient Safety Agency and from the NHS Information Authority with regards to their respective work on consent and information sharing. Other members included midwives, GPs, geneticists, clinicians, representatives from screening laboratories and parents.

The group emphasised the importance of accurate information forming the basis of the parents’ decision to proceed with screening. It was agreed that consideration should be given to the volume and timing of other clinical and screening information along the antenatal and newborn pathway to avoid information overload. Additionally, the group agreed that a detailed risk management assessment of the screening process, including the information-giving component, should be carried out. Two separate sub-groups have fulfilled both recommendations and their work was presented to the consent expert group at the second meeting.

The group reconvened in November 2003 having benefited from a consultation, which included Royal College of Midwives feedback and also a report on the revised consent process in Scotland. The proposed consent model for UK newborn blood spot screening was redrafted in the light of the expert group discussions that followed.

The proposed consent model for UK newborn blood spot screening was included in a wider consultation in June 2004 and the final policy launched in December 2004.