Special Research Initiatives - Grant ID: SR0354765
Funder
Australian Research Council
Funding Amount
$10,000.00
Summary
Developing a multidisciplinary international research network focussed on maximizing the social and health benefits to Australia of human genetic technologies. The initiative will build upon the Centre for Law and Genetics' existing informal networks, resources and infrastructure with the aim of constructing an Australian based multidisciplinary research network, with extensive functional global links. The network will be designed to facilitate and coordinate collaboration across disciplines, in ....Developing a multidisciplinary international research network focussed on maximizing the social and health benefits to Australia of human genetic technologies. The initiative will build upon the Centre for Law and Genetics' existing informal networks, resources and infrastructure with the aim of constructing an Australian based multidisciplinary research network, with extensive functional global links. The network will be designed to facilitate and coordinate collaboration across disciplines, institutions and geographic boundaries to address the legal, ethical, social, and policy implications of human genetic technologies. It will aim to maximise the social and health benefits in the most effective, efficient and economic manner; avoiding duplication and promoting the free exchange of ideas and information, and fostering cooperative effort on a global scale.Read moreRead less
Communicating genetic information in families: practical, legal, social and ethical issues. The outcomes of this study, will give evidence as to whether or not people do pass on genetic risk information to relatives, how they do it, what the barriers are, what their preferences are. It will also provide data so that mechanisms for best practice communication and clear guidelines for legal and health professionals can be developed. Effective communication and exchange of genetic risk information ....Communicating genetic information in families: practical, legal, social and ethical issues. The outcomes of this study, will give evidence as to whether or not people do pass on genetic risk information to relatives, how they do it, what the barriers are, what their preferences are. It will also provide data so that mechanisms for best practice communication and clear guidelines for legal and health professionals can be developed. Effective communication and exchange of genetic risk information will benefit individual health and the health of future generations.Read moreRead less
Better end-of-life care through an optimal, holistic regulatory framework. This project aims to enhance end-of-life care through better regulation. Current regulation does not work as intended and is complex and fragmented. This harms patients, families and health professionals, and wastes health resources across the 100,000 medical end-of-life decisions in Australia annually. Expected outcomes are: (1) the first study internationally to establish in practice how the interaction of conflicting l ....Better end-of-life care through an optimal, holistic regulatory framework. This project aims to enhance end-of-life care through better regulation. Current regulation does not work as intended and is complex and fragmented. This harms patients, families and health professionals, and wastes health resources across the 100,000 medical end-of-life decisions in Australia annually. Expected outcomes are: (1) the first study internationally to establish in practice how the interaction of conflicting law, policies, ethics and training affects the end-of-life care patients receive; and (2) a new holistic regulatory framework to enhance the quality of end-of-life care. Expected benefits are better palliative care, more patient involvement in decisions, reduced patient-doctor conflict and a more efficient health system.Read moreRead less
Commercial risk management in the health environment: exploring the legal and ethical boundaries of consent in genetic diagnostic research. There is little empirical research on consent in clinical research, particularly genetic diagnostic testing, despite its key significance to risk management in medical research practice. This study analyses consent procedures of clinicians and researchers for individual research participants. Key clinicians and Laboratory Heads engaged in genetic diagnostic ....Commercial risk management in the health environment: exploring the legal and ethical boundaries of consent in genetic diagnostic research. There is little empirical research on consent in clinical research, particularly genetic diagnostic testing, despite its key significance to risk management in medical research practice. This study analyses consent procedures of clinicians and researchers for individual research participants. Key clinicians and Laboratory Heads engaged in genetic diagnostic research will be interviewed and consent forms assessed. This will produce identification of trends in consent procedures and baseline information for national studies. The significance is the priority accorded genetic research, the need for adequate risk management in that context and development of optimal consent procedures and policy at State and National levels.Read moreRead less
Legal and ethical issues in the inheritable genetic modification of humans. This project aims to investigate the legal and ethical implications of technologies that allow inheritable modifications of the human genome. The use of these technologies in human embryos is fast becoming an international reality, and this project aims to examine the implications for Australia. The project will clarify the legal status of inheritable genetic modification technologies in Australia, analyse the ethics of ....Legal and ethical issues in the inheritable genetic modification of humans. This project aims to investigate the legal and ethical implications of technologies that allow inheritable modifications of the human genome. The use of these technologies in human embryos is fast becoming an international reality, and this project aims to examine the implications for Australia. The project will clarify the legal status of inheritable genetic modification technologies in Australia, analyse the ethics of these new technologies, and, building on this, recommend regulatory reforms to guide Australia’s response to international scientific and legal developments. These reforms could improve the governance of these new technologies and guide their clinical adoption.Read moreRead less
Gender Inequities in Health Research: Towards a New Regulatory Framework. This project will benefit Australian women by identifying better and fairer ways for the legal system to ensure that health research performed in Australia provides meaningful information about the significance of new health treatments for Australian women. The research undertaken in this project will make recommendations for the development of Australian laws and policies that will promote and maintain good health by enco ....Gender Inequities in Health Research: Towards a New Regulatory Framework. This project will benefit Australian women by identifying better and fairer ways for the legal system to ensure that health research performed in Australia provides meaningful information about the significance of new health treatments for Australian women. The research undertaken in this project will make recommendations for the development of Australian laws and policies that will promote and maintain good health by encouraging equal participation of men and women in health research and analysis by gender of research results. This is particularly important given the ageing of the Australian population and the greater longevity of women compared to men.Read moreRead less
Globalisation and Biomedicine: The Harmonisation of Local and Global Regulatory Demands. The pursuit of biotechnological research and development requires a clear and effective regulatory structure at both the global and national level. Australia's strengths in biotechnology and biomedicine and the Federal Government's strategy to support and promote Australian expertise demand the formulation of appropriate regulatory structures. This project will assess these issues with a focus on globalisato ....Globalisation and Biomedicine: The Harmonisation of Local and Global Regulatory Demands. The pursuit of biotechnological research and development requires a clear and effective regulatory structure at both the global and national level. Australia's strengths in biotechnology and biomedicine and the Federal Government's strategy to support and promote Australian expertise demand the formulation of appropriate regulatory structures. This project will assess these issues with a focus on globalisaton, Australia's federal legal system, the patient in society and health law, and the scope of effective legal regulation. The project will provide insights into and a theoretical understanding of existing global and national legal regulation of this sector as well as assisting in the formulation of future regulatory measures.Read moreRead less
Enhancing Reproductive Opportunity in Australia: Reconsidering Consent, Altruism and the Legal Status of Embryos in ART Processes. This project meets the national research priority of a healthy start to life by enhancing reproductive opportunity while safeguarding the rights and interests of all involved in reproduction with donor gametes. This research will create significant national benefits in the form of an up to date, practical and coherent platform for the reform of all aspects of embryo ....Enhancing Reproductive Opportunity in Australia: Reconsidering Consent, Altruism and the Legal Status of Embryos in ART Processes. This project meets the national research priority of a healthy start to life by enhancing reproductive opportunity while safeguarding the rights and interests of all involved in reproduction with donor gametes. This research will create significant national benefits in the form of an up to date, practical and coherent platform for the reform of all aspects of embryo and gamete donation and embryo disputes. We propose a pro-active consultative model that centres the needs and experiences of gamete and embryo donors and recipients. Our research will inform current and future modes of regulation of gamete and embryo donation and dispute resolution, including legislation, ethics guidelines and codes of practice.Read moreRead less
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
Legal and Ethical Regulation of the Use and Commercialisation of Human Biological Material. The Australian government has a policy of promoting expertise in genomics. An essential ingredient of research and development of the genomics industry is access to human biological material. A clear regulatory framework is required, consistent with national ethical principles. There is lack of clarity, legally and ethically, in relation to ownership (including derivative claims), consented and un-consent ....Legal and Ethical Regulation of the Use and Commercialisation of Human Biological Material. The Australian government has a policy of promoting expertise in genomics. An essential ingredient of research and development of the genomics industry is access to human biological material. A clear regulatory framework is required, consistent with national ethical principles. There is lack of clarity, legally and ethically, in relation to ownership (including derivative claims), consented and un-consented use, contracts, conflict of interest and benefit sharing in human biological material, including regenerative tissue. Clarification will facilitate ethical research and commercialisation. These issues will be analysed systematically with recommendations for Australia consistent with international standards.Read moreRead less