Should parental refusals of newborn screening be respected?

As the efficacy of genetic testing technologies improves and more is learned about genetic disease, the number of screening tests performed in newborn infants is set to increase. Indeed, a battery of tests is already performed in newborns to screen for conditions such as phenylketonuria (PKU) and congenital hypothyroidism (CHT). Screening can give rise to beneficial outcomes – a child born at risk of PKU will have a vastly different kind of life if the condition is detected in early infancy, as interventions can be introduced to prevent the onset of severe symptoms. And whilst clinical indications are more contentious for some other conditions, newborn screening programmes have been widely adopted worldwide. However, newborn screening is sometimes declined by parents. When this occurs, health care professionals face an ethically and legally contentious dilemma. Should parents’ decisions to decline screening be respected, or should it be carried out regardless? This paper analyses the competing principles at play in refusals of newborn screening. Taking PKU screening as an example, it is argued that children’s significant future interests should override parents’ rights to decline. However, even if such refusals are unjustified, the State does not necessarily have the right to intervene to compel parents to allow their child to be screened.