Evaluation, Policy & Ethics

Program 3 – Evaluation, Policy & Ethics

The successful integration of genomic medicine into the Australian health system necessarily multi-faceted, with legal, ethical, policy and economic implications as well as the challenges of health implementation.

We are analysing and modelling the impact of this integration to inform policy development and, in alignment with the National Health Genomics Policy Framework, to build evidence to support the efficient, effective, ethical and equitable implementation of genomics into the Australian health system.

Policy Development

Having an effective policy framework to guide the integration of genomics into mainstream healthcare is fundamental to its success.

A key aim of this project is to inform policy development. It includes providing a policy perspective on many areas of the program and addressing issues such as insurance discrimination, data access and genomic test evaluation.

Working with international experts in the field, the project team has developed a web-based resource that provides information on implementation initiatives and related policy issues (www.genomicspolicy.org) and is developing a roadmap for implementation.

Lead

Prof Robyn Ward
The University of Sydney

Policy Officer

Dr Andrea Belcher
Australian Genomics & The University of Queensland

Health Implementation Research

Implementation science is about the uptake of research findings in real world health care settings to ultimately improve the experience of patients and the wider population.

In essence, it seeks to bridge the gap between the research, or evidence, and service delivery by identifying barriers to implementation and assessing methods to overcome them.

The project team is working across a number of Australian Genomics clinical flagships and Programs to advance the implementation of genomic medicine into clinical practice.

Network Analysis: Understanding complexity

Australian Genomics is a national network of clinicians, scientists, researchers and consumers across more than 100 sites and with 80 member organisations. Genomic sequencing, which underpins much of the research, is a complex process.

This project studies Australian Genomics as an example of a complex adaptive system trying to understand the social influences and interactions that are making it work.

The project is using Rich Pictures, dynamic modelling and social network analyses to identify the key elements and emergent features of the network and how the various components inter-relate.

Australian Genomic members’ genomic learning community in 2016
Australian Genomic members’ genomic learning community in 2018

Source: Long JC, Pomare C, Best S, Boughtwood T, North K, Ellis LA, Churruca K, Braithwaite J. Building a learning community of Australian clinical genomics: a social network study of the Australian Genomic Health Alliance. BMC Medicine. 2019. 17 (1) : 44.

Lead

Prof Jeffrey Braithwaite
Australian Institute of Health Innovation
Macquarie University

Working Group

Dr Stephanie Best
Australian Genomics & Australian Institute of Health Innovation
Macquarie University

Prof Enrico Coiera
Australian Institute of Health Innovation
Macquarie University

Dr Janet Long
Australian Institute of Health Innovation
Macquarie University

Dr Peter Hibbert
Australian Institute of Health Innovation
Macquarie University

Dr Natalie Taylor
Australian Institute of Health Innovation
Macquarie University

Health Economics

This project builds evidence around the cost benefit and cost effectiveness of integrating genomic medicine into mainstream healthcare.

Health economic data is collected prospectively through the Australian Genomics Clinical Flagships to assist evaluations.

The project is also quantifying the benefit of genomic medicine to patients and their families and exploring individual preferences for genomic medicine.

It builds on the established networks of Australian Genomics’ partners and aims to inform state and federal government decisions on healthcare resource allocation.

Leads

Prof Philip Clarke
The University of Melbourne

Dr Ilias Goranitis
The University of Melbourne
Murdoch Children’s Research Institute

Working Group

A/Prof Kim Dalziel
The University of Melbourne

Dr Paula Lorgelly
Office of Health Economics, London

Dr Melissa Martyn
Melbourne Genomics Health Alliance

Prof Penelope Schofield
Swinburne Institute of Technology

Ethics and Legal Research

Australian Genomics researchers in ethics are contributing to a range of activities across several projects.

This includes providing ethical and legal expertise in areas such as:

Genomic Data Sharing

Our ethics researchers are also undertaking a project examining ethical, legal and policy Issues in genomic data sharing. Many issues arise from the use of genomic data, including ownership, regulation, commercial use and data sharing.

This project explores the ethical and legal landscape of genomic data sharing in Australia. It comprises ethico-legal desk-based research, as well as a qualitative interview project to determine the views of key stakeholders. Collectively, this project will help inform a robust framework for data sharing in Australia.

Lead

A/Prof Ainsley Newson
The University of Sydney

Research Associate

Ms Norah Grewal
Australian Genomics & The University of Sydney