Prof. Ainsley Newson1
1Sydney Health Ethics, University of Sydney
Assessing new health tests and interventions for funding, as occurs with the Medical Services Advisory Committee (MSAC) in Australia, utilises core guidelines. While this process is transparent, it is subject to limitations. Three such limitations are that: (1) methods for consideration of ethical issues are based on a health technology assessment framing, which has limitations for large-scale precision health interventions and their rollout; (2) there is limited scope to consider the value – especially normatively justified value – of testing beyond clinical utility or cost effectiveness; and (3) it is difficult to formally incorporate aspects such as legal issues or equity considerations. In recent years, there have been multiple applications to MSAC regarding precision health interventions, including genetic and genomic testing. Most of these have been successful, however these have generally related to well defined clinical uses. Other applications, such as for non-invasive prenatal screening (NIPS), and forms of reproductive genetic carrier screening (RGCS) have not been successful to date. This has to do with the inherent complexity of these interventions, but it also highlights the difficulty of incorporating considerations of ethics. This paper will present some early work to unpack what this status quo means, and how ethical considerations can be appropriately incorporated into the assessment processes when funding precision health interventions.
Biography:
Ainsley Newson Professor of Bioethics at Sydney Health Ethics, University of Sydney, Australia. She has worked in bioethics for over 20 years, holding combined teaching/research academic positions in Australia and the United Kingdom. Ainsley’s research critically considers ethical issues in genomics and human reproductive technologies, specifically how they can be used well across research, clinical and population health settings. She has led bioethics programs of work within large initiatives such as the Australian Genomics Health Alliance and has been funded by leading funders in Australia, the United Kingdom and Europe. Ainsley has published over 140 peer-reviewed papers, book chapters and commentaries. She teaches bioethics in the Sydney Master of Bioethics and guest lectures medical students and other postgraduates. Ainsley is a member of the Australian Health Ethics Committee and the New South Wales Health Ethics Advisory Panel, and is also active in the Regulatory and Ethics Working Group of the Global Alliance on Genomics and Health. In 2022 Ainsley founded AusGenELSI, a network to bring people together to consider ethical, legal and social issues in genomics in Australia.