This chapter offers a regional perspective from the UK, examining the contemporary governance of population health screening programmes, the role of stakeholder engagement and the challenges presented by new genomic technology. It draws upon the workings of the UK National Screening Committee (UK NSC) in two interconnected areas.
First, it examines the role and impact of public dialogue and stakeholder engagement in decision-making, the formation of recommendations and governance of public health screening programmes. Here, building trust and confidence are seen as important and justifying features for appropriate stakeholder consultation, collaboration and communication. In this context, we highlight the ongoing public dialogue initiated by Genomics England and UK NSC about the possible future use of whole-genome sequencing in newborn screening.
Secondly, the chapter examines the UK NSC Ethical Framework for Screening. This introduces four high-level and transparent ethical principles that aim to help guide decision-making by the UK NSC: (1) improve health and wellbeing; (2) treat people with respect; (3) promote equality and inclusion; and (4) use public resources fairly and proportionately. The decision to adopt this framework raises some obvious questions about the practical translation of these principles across screening practices and as a legitimate response to technological disruption. The explicit commitment by UK NSC that all the principles are ‘equally as important as each other’ may not only prove difficult to apply in practice in multi-stakeholder environments but ethically contentious, if and when those principles come into conflict.
The UK NSC's commitment to greater transparency and accountability appears to be a positive step for its future governance. Similarly, the adoption of an ethical framework suggests that the NSC recognises the burden that they have to provide ethical justification for their decision-making. However, there remain some important questions about their role and legitimacy as a body explicitly tasked with providing advice to the Executive and the NHS. For example, does the UK NSC have the appropriate set of principles, mechanisms of stakeholder engagement and processes to accommodate pluralistic viewpoints across the scientific and wider community; whilst simultaneously navigating the complex boundary between the public health rationale(s) for screening and the need for ethical medical practice in response to technological disruption?