Grant: CIHR Fellowship

Newborn screening is the program through which babies are screened for a variety of conditions shortly after birth. Whilst it resembles a traditional public health program - because is aimed at large groups of the parents and offered to people considered healthy - it is done on an individual basis. However, there is a possible conflict between promoting what experts feel is an effective public health program and allowing individuals to make an informed choice, which may include refusals. To date we have little information on the views of different stakeholders (parents, healthcare professionals, policy-makers) about the role of this choice and how best to deal with this possible conflict. The aim of this research is to explore this role of choice using newborn screening as a case study. This research is arranged in two parts. The first stage involves interviews and discussion groups with parents, healthcare professionals and policy-makers to explore their views and experiences of choice and informed consent within screening. This will identify key issues to be taken forward. The second stage involves a survey based on stage one that will be sent to key decision makers, patients, and healthcare professionals. We will analyze responses to look for different sorts of views and see if these are linked to the type of person responding e.g do patients hold different views to healthcare professionals or policy-makers. We hope that the research will identify where people have similar views and where there are differences, together with how and where they happen. By doing so we hope that we can improve both policy and the informed consent process by making communication clearer.