Gene Patents in Australia: Options for Reform. Controversies over the upsurge in gene patenting, access to pharmaceuticals, biopiracy, and ownership of genetic resources, lead many to question whether patent law is appropriate for biotechnology. Do patents thwart access to beneficial technologies such as drugs, research tools and new crops, while hampering policy options for health care and agriculture? This project addresses the urgent need for a comprehensive study of the impact of biotech pat ....Gene Patents in Australia: Options for Reform. Controversies over the upsurge in gene patenting, access to pharmaceuticals, biopiracy, and ownership of genetic resources, lead many to question whether patent law is appropriate for biotechnology. Do patents thwart access to beneficial technologies such as drugs, research tools and new crops, while hampering policy options for health care and agriculture? This project addresses the urgent need for a comprehensive study of the impact of biotech patenting, critically reviewing overseas developments, setting biotechnology in the broader policy context of intellectual property law, and empirically analysing patterns rather than relying on the anecdotal and piecemeal studies that dominate this area.Read moreRead less
'The fingers of the powers above do tune the harmony of this peace': Australia and the Harmonisation of Patents. Patent law is central to the key economic aim of encouraging an innovative culture. The harmonisation of patent systems around the world means Australian law will change. There is a significant risk that, without effective lobbying, the reforms will only reflect the needs and interests of the dominant economies, like the US. This project, with its comparative analysis of the patent e ....'The fingers of the powers above do tune the harmony of this peace': Australia and the Harmonisation of Patents. Patent law is central to the key economic aim of encouraging an innovative culture. The harmonisation of patent systems around the world means Australian law will change. There is a significant risk that, without effective lobbying, the reforms will only reflect the needs and interests of the dominant economies, like the US. This project, with its comparative analysis of the patent examination process, will explore the ways in which this integral part of the patent system may be improved. This research will lead to proposals for reform that are in line with the interests of Australia's unique economy.Read moreRead less
The Economic And Social Impacts Of Genetic Sequencing For Intellectual Disability
Funder
National Health and Medical Research Council
Funding Amount
$1,263,576.00
Summary
In this project we will quantify the social and financial costs to families of severe intellectual disability that is genetic in origin. We will assess these impacts in terms of poorer carer health, relationship breakdown, lost income and risk of poverty, as well as increased dependence on government, particularly on welfare payments, and reduced personal income tax paid. We will then determine the extent to which modern clinical genomics can contribute to ameliorating these impacts.
Intellectual Property and the Rural Sector: Harvesting the benefits of science and technology. Recent developments in agribusiness and biotechnology promise benefits for the rural sector. However, there has been little research into the Intellectual Property needs and expectations of the sector, a crucial aspect of the innovation process. This hampers policy debate, the development of effective commercialisation strategies, and undermines the effectiveness of Intellectual Property education. T ....Intellectual Property and the Rural Sector: Harvesting the benefits of science and technology. Recent developments in agribusiness and biotechnology promise benefits for the rural sector. However, there has been little research into the Intellectual Property needs and expectations of the sector, a crucial aspect of the innovation process. This hampers policy debate, the development of effective commercialisation strategies, and undermines the effectiveness of Intellectual Property education. This project, the first of its kind, addresses these problems by ascertaining the Intellectual Property needs of rural Australia, through empirical research into policy, education and commercialisation, and provides an understanding essential to support the economic and social development of rural communities.Read moreRead less
Hospital Admission, Cerebral Palsy, Intellectual Disability And Birth Defects In Assisted Conception Infants.
Funder
National Health and Medical Research Council
Funding Amount
$115,110.00
Summary
We have recently completed a study examining the prevalence of birth defects in assisted conception infants born in Western Australia from 1993-1997. Contrary to reassuring claims by other researchers in this area, we found that assisted conception infants have a two-fold increased risk of being diagnosed with a major birth defect by one year of age. We now propose to examine other long-term health outcomes in these children. This study involves record linkage between the WA Reproductive Technol ....We have recently completed a study examining the prevalence of birth defects in assisted conception infants born in Western Australia from 1993-1997. Contrary to reassuring claims by other researchers in this area, we found that assisted conception infants have a two-fold increased risk of being diagnosed with a major birth defect by one year of age. We now propose to examine other long-term health outcomes in these children. This study involves record linkage between the WA Reproductive Technology Register and four other population-based databases. The prevalence of cerebral palsy, intellectual disability, hospital admission and birth defects in assisted conception children born in WA between 1993 and 2001 will be compared to that seen in all other Western Australian children born over the same time period. The collection of information on risks associated with assisted conception treatment is vital to allow adequate counselling of couples considering fertility treatment. Cerebral palsy, intellectual disability, birth defects and hospital admission are all serious adverse health outcomes and, despite the introduction of IVF to most Western countries twenty years ago, there are limited data in the literature concerning the occurrence of these conditions in assisted conception infants. Quantifying the contribution of assisted conception treatment to neonatal, infant and childhood morbidity and mortality is also important for the planning of health service provision. Although assisted conception births represent only a small proportion of total births in Australia, these infants may require a disproportionate level of health care services, such as neonatal intensive care treatment due to complications associated with preterm or multiple birth. The wide application of assisted conception treatment in Australia and the increased number of pregnancies achieved by these means reinforce the urgent need for valid data on the health of children born after these procedures.Read moreRead less
RCT Of An Intervention To Improve The Health Of Adolescents With Intellectual Disability.
Funder
National Health and Medical Research Council
Funding Amount
$803,146.00
Summary
A high number of people with intellectual disability die at a younger age than the general population - 5 to 20 years younger. The standard of their health is low compared with others. They experience high levels of unrecognised disease and do not receive health promotion or health screening. As they comprise 2.7% of our population (502,000 Australians) - this situation is unjust and should be rectified. The barriers to good health for them include communication difficulties, impaired recall of ....A high number of people with intellectual disability die at a younger age than the general population - 5 to 20 years younger. The standard of their health is low compared with others. They experience high levels of unrecognised disease and do not receive health promotion or health screening. As they comprise 2.7% of our population (502,000 Australians) - this situation is unjust and should be rectified. The barriers to good health for them include communication difficulties, impaired recall of significant health information, negative social attitudes and inadequate training about disability for health service providers. This project is an attempt to minimise some of these barriers by examining the use of a Health Intervention Package. We want to give young people with intellectual disabilty the chance of similar health standards to the rest of the population. This package includes a comprehensive health review, a diary for collecting and storing health information, and advocacy training. We specifically want to examine if adolescents with intellectual disabilty using this package will receive better healthcare and improved health outcomes. We envisage that if successful, the intervention will establish good health practices for the rest of the young person's life. This group of young people is particularly at risk as they move from care provided by specialist paediatricians to accessing General Practitioners' services. To achieve this, the study will seek to recruit 1000 young people (and their parents and teachers) in Special Schools in Queensland. We have already shown that the comprehensive health review does improve health outcomes adults with intellectual disabilty, and the health information and advocacy training has received very positive evaluation. We now need to investigate the effect of both these processes in adolscence and establish if evidence exists to support wider implementation throughout the sector.Read moreRead less
Transforming The Diagnosis And Management Of Severe Neurocognitive Disorders Through Genomics
Funder
National Health and Medical Research Council
Funding Amount
$2,499,330.00
Summary
Neurocognitive disorders (NCD) are one of the most common genetic conditions in our society and it results with a need for ongoing permanent care for many affected people. Until recently, only 30% of people with NCD could be diagnosed but this has changed with the availability of genomic testing where all genes can be tested at once. The use of genomics in the CRE will lead to new NCD genes being identified and this information being translated into a clinical setting.
Facilitation and Regulation of Research and Development Involving Human Genetic Databanks. Australia's medical biotechnology research feeds into our biotechnology industries, with flow-on benefits for national health and prosperity. Realisation of these benefits is contingent upon community protection and public trust. An effective and appropriate regulatory regime is a foundation requirement. This project aims to shape a national regulatory framework for human genetic databanks that both facili ....Facilitation and Regulation of Research and Development Involving Human Genetic Databanks. Australia's medical biotechnology research feeds into our biotechnology industries, with flow-on benefits for national health and prosperity. Realisation of these benefits is contingent upon community protection and public trust. An effective and appropriate regulatory regime is a foundation requirement. This project aims to shape a national regulatory framework for human genetic databanks that both facilitates research and maintains highest ethical standards. By examining the balance between facilitation and regulation, assessing existing law reform proposals, making recommendations for further reform, and placing this analysis in the international context, this project will significantly benefit the nation and the research community. Read moreRead less