Equity in newborn sequencing: a capability approach perspective

Abstract Definition of the problem Newborn sequencing (NBSeq) offers the potential to detect hundreds of genetic conditions from infancy. On this basis, some consider NBSeq to be a revolutionizing equalizer, promising access to genomic testing for all newborns. However, the unique nature of equity in NBSeq has been oversimplified in the literature; the existing debate mainly highlights universal access as an automatic means of ensuring fair health outcomes. Arguments We apply the Capability Approach (CA) to argue that providing access alone is not sufficient to achieve equity. Instead, the emphasis should be placed on developing capabilities that enable people to use NBSeq effectively and achieve meaningful health outcomes. Using capabilities as a measure of justice and eventually developing our own list, we provide an overview of systemic barriers within the process, including the underrepresentation of genomic data and variations in health literacy. This model allows us to extrapolate how these factors can affect individuals—particularly those from underserved backgrounds—in their ability to translate the benefits and outcomes provided by NBSeq into improved well-being throughout their lifespan. Conclusion The CA provides a pluralistic perspective on equity in NBSeq by emphasizing an important distinction for justice in healthcare: the distinction between simply doing NBSeq and having the real freedom to choose to do NBSeq and then doing it. Equity in NBSeq requires refining justice by not only increasing access to the service itself but also ensuring the freedom for all to act on that justice in meaningful ways, leading to flourishing.