A National Digital Platform Privileging Time Honoured Indigenous Knowledge
Funder
National Health and Medical Research Council
Funding Amount
$35,000.00
Summary
Our vision is for a modern digital ‘National Network’ of sustainable research partnerships that benefit Aboriginal and Torres Strait Islander communities. Using the Uluru Statement framework for community dialogues, we will develop a governance framework that is 'fit for purpose' and which safeguards Indigenous people against the risks of research. A governance framework reflecting community priorities will lead to a culturally safe digital platform and a shared vision for Indigenous research.
Ethics And Equity: Developing Ethical Guidance For Health Policy And Systems Research In Developing Countries
Funder
National Health and Medical Research Council
Funding Amount
$374,706.00
Summary
Health policy and systems research (HPSR) in developing countries is vital to achieving the Millennium Development goals, but ethical guidance specific to this field has not been developed. This project will identify the ethical obligations of funders, research institutions, and researchers undertaking HPSR in developing countries and will describe strategies for how these obligations might be upheld in practice.
An Ethical Analysis Of The Disclosure Of Surgeons' Performance Data To Patients Within The Informed Consent Process
Funder
National Health and Medical Research Council
Funding Amount
$148,937.00
Summary
For over a decade, hospitals in the American state of New York have been collecting information about the mortality rates of surgeons conducting Coronary Artery Bypass Grafts, and making this information available to patients. The United Kingdom is set to make these and other performance indicators on the ability of surgeons ('report cards') available from 2004. There are good reasons to think a similar system may be introduced in Australia in the near future. Patients can use the information co ....For over a decade, hospitals in the American state of New York have been collecting information about the mortality rates of surgeons conducting Coronary Artery Bypass Grafts, and making this information available to patients. The United Kingdom is set to make these and other performance indicators on the ability of surgeons ('report cards') available from 2004. There are good reasons to think a similar system may be introduced in Australia in the near future. Patients can use the information contained in report cards when deciding whether or not to consent to have a particular surgeon conduct an operation on them. Contemporary bioethicists stress the importance of a proper informed consent process in medicine. This is a process in which a doctor advises a patient of relevant information and ensures that the patient comprehends that information, before the patient consents to an operation. Currently report cards in America are publicly disseminated on the internet, however there is no systematic attempt to incorporate the information contained in report cards into the informed consent process. We do not know if patients understand the information they are given, or if they incorporate it into their decision making procedures appropriately. In our study we will consider how information that is contained in report cards could best be used in the informed consent process. We will keep in mind the importance of helping patients to make their own informed decisions to consent to operations, the importance of respecting the professional integrity of surgeons and the importance of providing the best possible standard of care for patients. The result of our study will be a revised model of the informed consent process that incorporates report cards in an ethically acceptable way.Read moreRead less
Ethics, responsibility and the carbon budget. This project aims to provide a rigorous ethical framework for dividing the world’s remaining ‘carbon budget’ (CB). In order to avoid climate change the world must drastically limit its emissions of greenhouse gases. The project will develop a new analysis of how our assumptions concerning risk and harm shape conception of the CB. It will also provide a new understanding of how future emission rights should be allocated given that countries have emitt ....Ethics, responsibility and the carbon budget. This project aims to provide a rigorous ethical framework for dividing the world’s remaining ‘carbon budget’ (CB). In order to avoid climate change the world must drastically limit its emissions of greenhouse gases. The project will develop a new analysis of how our assumptions concerning risk and harm shape conception of the CB. It will also provide a new understanding of how future emission rights should be allocated given that countries have emitted vastly different quantities of greenhouse gases in the past. The project will analyse how the CB will impact the climate transition plans of countries such as Australia. The project will thus bring significant new research in philosophy to bear on a practical issue.Read moreRead less
The Ethics And Politics Of Pharmaceutical Innovation And Translation
Funder
National Health and Medical Research Council
Funding Amount
$476,728.00
Summary
I lead a research program on the ethics and politics of pharmaceutical innovation and translation: how medicines are developed, regulated, funded and taken up into practice. I aim to help policymakers to deal with conflicts among stakeholders. Over the next 4 years I will conduct a suite of research projects on topics of immediate significance to Australian policymakers; develop a new framework for pharmaceutical ethics and create a “Pharmaceutical Ethics and Politics Network.”
Defining An Ethical And Evidence-based Approach To Clinical Research In Children And Adolescents With Chronic Kidney Disease (CKD)
Funder
National Health and Medical Research Council
Funding Amount
$84,800.00
Summary
Chronic kidney disease (CKD) in children and adolescents is a serious health condition, which impacts patients' academic abilities and achievement as well as their social wellbeing and their physical and mental health. This study will investigate the range of impacts that CKD has on patients and families, and explore the ways that these problems should best be addressed in future research from the perspective of patients and their families.
An integrated platform built on efficient informatics concepts already implemented in international research infrastructures for large-scale data management, providing access to federated databases/registries, biobank catalogues, harmonised - omics profiles, and bioinformatics tools. Patient data types will be linked via a unique identifier “RD-ID” developed jointly with the US NIH. RD-Connect is a primary enabler for IRDiRC funded research to improve treatment and management of rare diseases