The Ethics of Sequencing Every Baby at Birth

The Ethics of Sequencing Every Baby at Birth

Lisa Dive^1,2, Josephine Johnston^3,4, Angus Dawson⁵, Isabella Holmes², Ainsley Newson², University Of Technology Sydney Sydney², Sydney NSW³, New Zealand^Garrison, USA 5

¹University Of Technology Sydney, Sydney, NSW, Australia
²University of Sydney, Sydney, NSW, Australia
³University of Otago, Dunedin New Zealand
⁴Hastings Center, Garrison, New York, USA
⁵National University of Singapore, Singapore Singapore

Abstract

Newborn bloodspot screening (NBS) is a highly successful public health intervention with high public trust and high uptake. Programs have been in place for over 50 years to detect a small number of rare conditions for which early identification and treatment is beneficial. NBS programs are scientifically and ethically justified according to well-established screening criteria. They typically screen for biochemical and metabolic markers and are inexpensive to implement. Technological developments are now leading several health systems globally to consider the use of next generation sequencing in NBS, raising the possibility of screening every baby for genetic predispositions to a huge range of conditions of varying severity, penetrance, and age of onset.
While NGS could be incorporated into NBS in various ways, all generate ethical issues. Drawing on research in Australia, USA, the UK, and New Zealand, this “In Conversation” session will explore the ethics of genomic sequencing in the public health newborn screening context, including the potential for this use to generate novel genomic databases. Presenters will identify the significant ethical tensions arising when population genomics is applied in the newborn context, highlighting the central ethical concepts relevant to newborn sequencing including trust and utility, as well as the ethical justification for population screening more broadly. We will then explore various strategies for managing those tensions. Audience members will be invited to provide their suggestions for navigating these rich and highly topical ethical challenges with reference to the Australian and New Zealand health systems.

Biography

Lisa Dive is a Lecturer in the Graduate School of Health at UTS, and her research focuses on the ethical aspects of genetics and genomics. She is a bioethics scholar with a background in analytic philosophy, research qualifications in both philosophy and bioethics, and professional experience in health policy.

Josephine Johnston teaches medical law and bioethics at the University of Otago and is a Senior Research Scholar at The Hastings Center. Her research addresses ethical, legal, and policy issues in medicine and science, with a focus on emerging biotechnologies in human reproduction and genetics.

Angus Dawson is Professor of Bioethics at the Centre for Biomedical Ethics (CBmE) at the National University of Singapore. He has worked previously in Australia, Canada and the UK. His research interests are in public health ethics, non-Western bioethics, and methods in bioethics.

Isabella Holmes is a PhD student at Sydney Health Ethics, The University of Sydney. Her thesis work explores theories of autonomy in prenatal genomics. Her research interests include reproductive ethics, normative ethics, and feminist theory.

Ainsley Newson is Professor of Bioethics at the University of Sydney. Her research critically considers ethical issues in genomics and related technologies. The ethics of newborn screening is one of Ainsley’s current research foci. In addition, Ainsley is Policy co-lead with Australian Genomics and leads the Australian ELSI Genomics Network.