Grant: Operating Grant - Priority Announcement: Ethics

Newborn screening (NBS) is the program through which babies are screened for a variety of conditions shortly after birth. In Canada, NBS generally proceeds on an implied consent basis, yet to date there has been little research assessing the impact of attitudes to consent practices on stakeholder experiences of the consent process. Do individuals, and particular groups of individuals, view and experience the consent process for NBS differently? If so, where are the differences and how do individuals or groups differ? This is important as NBS is not without the potential for harm - such as distress or impaired parent child bonding. Research suggests that these harms may be worsened if parents do not feel informed or do not understand NBS. If consent practices to screening are experienced inequitably, these harms may also be born unfairly. The overall aim of this project is to inform NBS policy and practice regarding consent processes for newborn screening in Canada by exploring the attitudes and experiences of parents, healthcare professionals, and policy decision-makers. This research is arranged in two parts. The first stage involves interviews to explore stakeholder views and experiences of consent practices for newborn screening. The second stage involves a survey based on stage one that will be sent to parents and healthcare professionals. We will analyze responses to look for groups with shared attitudes towards consent and experiences of participating in newborn screening. This study will present the first empirical data comparing stakeholder attitudes and experiences of consent to NBS. This is highly relevant with the expansion of screening panels and initiatives to introduce whole genome/exome sequencing technologies to NBS. The results will also inform the development of interventions to mitigate any inequities in parent decision-making about NBS.