gEnomics4newborns
Research to integrate ethics and equity with effectiveness and economics for genomics in newborn screening
Exploring the legal, ethical, equity and economic implications of genomics in newborn screening
About us
Adding genomic testing to Australia’s current newborn screening program could identify hundreds of additional genetic conditions and improve outcomes for infants and families. However, any such change to existing newborn screening programs would also bring with it a range of important ethical, legal, and social considerations which require input from a wide range of stakeholders. We must ask not only ‘can we use genomics to screen newborns?’ but ‘should we use genomics to screen newborns?’
Additionally, current health technology assessment (HTA) methods used by government to assess population screening programs have not kept pace with advances in genomics. New approaches are required which formally incorporate ethical, legal and equity aspects into HTA decision-making.
The gEnomics4newborns research project aims to develop health technology assessment tools, informed by a diverse range of community and stakeholder views, to assist government to streamline assessments of genomics in newborn screening, enabling faster public access to screening that is equitable, effective, cost-effective and ethically-informed. The research is being guided by a Consumer Advisory Group of members of the rare disease community.
What we do
Our Research
Ethics
What are the ethical implications that are important to Australians when it comes to using genomics in newborn screening?
Equity
How should equity be incorporated into the assessment of genomics in newborn screening?
Effectiveness
How do we evaluate the benefits and harms of genomics in newborn screening?
Economics
How do we assess the value of genomics in newborn screening to ensure it’s implemented in a sustainable way?
What Drives Us
Our Aims
gEnomics4newborns aims to develop new health technology assessment tools that will streamline future assessments of the value of genomics in newborn screening, enabling faster public access to screening that is equitable, effective, cost-effective and ethically-informed.
Register to Participate
The gEnomics4newborns project is inviting parents and carers of children who have participated in newborn screening, health professionals, researchers, and those working in government, to be interviewed to share experiences and perspectives on using genomics in newborn screening. To register your interest click the button to send an email.
Please note, our project is about investigating how we should assess the ethics, equity effectiveness and economic aspects of using genomics in newborn screening. We are not conducting genomic sequencing as part of this study.
(GenSCAN)
Genomic Screening Consortium for Australian Newborns
gEnomics4newborns is one of five research projects awarded by the Australian Genomics Health Futures Mission (GHFM) and National Health and Medical Research Council (NHMRC) exploring the feasibility, effectiveness, and health economic, ethical and equity aspects of applying first- or second-tier genomics in newborn screening programs.
The Genomic Screening Consortium for Australian Newborns (GenSCAN) was established as a collaborative forum to share and pool findings from the five projects to maximise the national policy impact and minimise the consultation burden on consumers and patient advocacy groups. GenSCAN is organised into six working groups focusing on: clinical oversight and gene selection; technical platforms; bioinformatics and data analysis; ethical, legal and social issues; health policy and economics; and stakeholder engagement.
Genomic Screening Consortium for Australian Newborns (GenSCAN)
Learn
About The Research
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- Enabling effective diagnosis in newborns of diseases caused by genetic mutations to support development of earlier and more effective interventions and treatments
- Conduct research addressing emerging ethical, legal and social issues associated with the governance of clinical and genomic datasets[1]
The project brings together leading researchers from a range of disciplines, together with community partnerships, to address the following questions:
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- What are the views of Australian stakeholders regarding the ethical, legal and equity implications of using genomics in newborn screening?
- How can stakeholder views on ethical, legal and equity implications of genomics in newborn screening be integrated with assessments of effectiveness and cost-effectiveness?
- What are the most appropriate Assessment Criteria for evaluating the ethic, equity, effectiveness and cost-effectiveness of genomics in newborn screening and are they acceptable to policy makers?
Team
Researchers
Research Team
Associate Professor Sarah Norris
Professor Kirsten Howard
Professor Ainsley Newson
Dr Sandi Kariyawasam
Ms Jo Watson
Professor Gail Garvey
Professor Stacy Carter
Professor Gareth Baynam
Associate Professor Katy Bell
Professor Sarah Wordsworth
Dr Kristen Nowak
Professor Jonathan C. Craig
Dr Dylan Mordaunt
Professor Kylie Mason
Professor Margaret Otlowski
gEnomics4Newborns
Research Partners
