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
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
Improving The Quantity, Quality, Relevance And Conduct Of Clinical Trials Of Medicines In Children.
Funder
National Health and Medical Research Council
Funding Amount
$102,576.00
Summary
I am a specialist clinical trials pharmacist focussed on the challenges associated with the conduct of medicinal trials in children. My intention is to collect evidence to determine the best strategies for improving the quantity, quality and relevance of clinical trials in children. This will help to ensure safe and effective age-appropriate drug therapies for children and improve the health outcomes of our children.
A new ethics for the development and application of genetic technologies in a pluralist society. New technologies for prenatal testing and preimplantation genetic diagnosis will soon grant us an unprecedented power to choose our children's genes. This project will develop an ethical framework to govern the development and use of these technologies and thus help ensure that future Australians enjoy a healthy start to life.