Lecturer University of Technology Sydney (Australia), Australia
Newborn bloodspot screening (NBS) is a highly successful public health intervention with high public trust and high uptake. Programs have been in place in many countries for over 50 years with the aim to detect rare conditions for which early identification and intervention is beneficial. Until now, NBS programs have been scientifically, ethically, and legally justified according to well-established screening criteria. They typically screen for biochemical and metabolic markers that are inexpensive to identify and for which effective treatments exist. With technological advancements in genome sequencing methods, a reduction in their cost, and increased data storage capacity, several health systems globally are beginning to consider the use of next generation sequencing (NGS) in NBS. This technological shift raises the possibility of undertaking sequencing in every baby, potentially to identify genetic predispositions to a huge range of conditions of varying severity, penetrance, and age of onset.NGS could essentially and significantly redefine how newborns and families may benefit from NBS. It could be incorporated into NBS in various ways, all of which generate ethical questions. Drawing on research in Australia, the United States, and the United Kingdom this panel discussion will critically interrogate the ethics of genomic sequencing in the public health NBS context, including its potential to benefit families, generate novel genomic databases, and impact health disparities. With audience input, we will then explore policy and practice approaches for managing the identified tensions and equity concerns.
