Dr Gabriel Watts1, Prof. Ainsley Newson1
1Sydney Health Ethics, Sydney, Australia
Biography:
Gabriel Watts is a postdoctoral research fellow with Sydney Health Ethics at the University of Sydney.
Abstract:
The potential introduction of genomic sequencing into newborn screening programs is under consideration in many countries, including Australia. One aspect of ethical debates in genomic newborn screening (gNBS) is the need to draw on concepts and approaches from public health ethics when determining how gNBS ought to be implemented. That the implementation of genomics in healthcare must accommodate public interests and concerns is increasingly well accepted. In line with this, those advocating for a public health ethics approach to gNBS have appealed to solidarity as a means of counter-acting an emphasis on more individualistic concepts such as patient autonomy and empowerment as the primary or only ethical considerations that ought to govern the implementation of gNBS.
In this paper we examine solidarity with newborns and their carers not as a limiting ethical factor in the design of gNBS programs but as a normative justification for the practice of newborn screening, and gNBS specifically. We compare solidarity with other commonly articulated normative grounds for implementing a newborn screening program – clinical utility, equity, harm minimization, and cost-effectiveness. We argue that solidarity not only often is, but in certain circumstances ought to be the primary normative ground upon which newborn screening is offered. Specifically, we argue that the demands of solidarity justify (1) accommodating potentially harmful prognostic uncertainty when evaluating the expansion of newborn screening through gNBS, but also (2) resisting a technology-driven approach to gNBS on the grounds of cost-effective equity of access to treatment.