Establishing Antenatal Screening Uptake For Fetal Anomalies In The NT And Exploring Indigenous Womens Understanding
Funder
National Health and Medical Research Council
Funding Amount
$9,875.00
Summary
This project aims to investigate the views of Indigenous women, their families and health service providers about antenatal screening tests for abnormalities like Down syndrome. This will contribute knowledge about why there is low uptake of screening amongst Indigenous women, and whether changes in the provision of antenatal care are required. This is important because all women, regardless of their culture or location, should be offered the same opportunities and care during pregnancy.
Difficult Decisions: A Critical Analysis Of Consent To High-risk Medical Procedures
Funder
National Health and Medical Research Council
Funding Amount
$320,918.00
Summary
Consent is the cornerstone of ethics as applied to healthcare and is central to the relationship between healthcare and the law. Whilst no-one would deny the importance of seeking consent to high-risk medical procedures, much depends on the practical manner in which this is done. By studying consent for high-risk procedures with the participation of patients and their health care providers, we will both test the limits of consent and find practical ways to address those limits. In doing so, the ....Consent is the cornerstone of ethics as applied to healthcare and is central to the relationship between healthcare and the law. Whilst no-one would deny the importance of seeking consent to high-risk medical procedures, much depends on the practical manner in which this is done. By studying consent for high-risk procedures with the participation of patients and their health care providers, we will both test the limits of consent and find practical ways to address those limits. In doing so, the project will re-cast consent processes in a way that better accommodates the contingencies of clinical practice in high-risk settings in which patient autonomy is often compromised. Because this reformulation of consent will be grounded in the realities of high-risk clinical practice, our findings will reflect the needs and values of relevant stakeholders (patient and health professionals) and more likely to make a significant contribution to patient care and health policy. This project also addresses what the High Court of Australia has acknowledged as widespread weaknesses in the common formulation of consent in medicine. Finally this project, which operates in an important area of overlap between the law and medicine, will show how these disciplines can work jointly to serve the interests of all Australians, and Australian society.Read moreRead less
Competence To Give Informed Consent For Research Participation In Schizophrenia And Related Psychoses.
Funder
National Health and Medical Research Council
Funding Amount
$300,000.00
Summary
There is current controversy surrounding the ethics of allowing people with mental illness to participate in research. By trying to safe guard what is considered a vulnerable group, we may also be denying these people their rights to make decisions for themselves. The potential benefits of clinical research in an area where treatments are often ineffective and cause serious side effects may also be denied to these people. This study aims to measure the capacities of patients with psychoses to gi ....There is current controversy surrounding the ethics of allowing people with mental illness to participate in research. By trying to safe guard what is considered a vulnerable group, we may also be denying these people their rights to make decisions for themselves. The potential benefits of clinical research in an area where treatments are often ineffective and cause serious side effects may also be denied to these people. This study aims to measure the capacities of patients with psychoses to give informed consent to participate in clinical research. The uniqueness of this project is that subjects will be rated as either competent or incompetent according to legal definitions applicable in Australia by utilising predetermined thresholds. We will also determine whether performance of patients in tests of competence can be improved through an established educational program. Additionally we plan to re-evaluate patients after a period of 6 months in order to test the reliability of competence performance.Read moreRead less
Ethical And Legal Issues Surrounding The Decision-making Process For Donating And Banking Umbilical Cord Blood
Funder
National Health and Medical Research Council
Funding Amount
$417,550.00
Summary
Altruistic donation of umbilical cord blood (UCB) is essential to provide a source of stem cells to treat various cancers and blood-immune disorders. However, parents can instead, bank UCB for personal use. This project will determine if parents are aware and understand differences between UCB donation and banking, as well as analysing the legal issues surrounding both processes. We aim to make recommendations to improve the decision-making process with the hope of increasing UCB donation rates.
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
Randomised Controlled Evaluation Of A Complex Intervention To Promote Uptake Of School-based HPV Vaccination
Funder
National Health and Medical Research Council
Funding Amount
$750,911.00
Summary
Adolescents have little understanding and high levels of fear about HPV vaccination in the Australian school program. We plan to evaluate a multi-strategy intervention (incorporating an adolescent education intervention, a parental decision aid, and procedural facilitators) to promote uptake and informed participation in the school-based HPV vaccination program. The intervention will promote understanding, reduce fear, and have minimum impact on school and teacher resources.
Consumer Information Materials And A Communication Aid For Diagnostic Tests For Breast Disease
Funder
National Health and Medical Research Council
Funding Amount
$105,863.00
Summary
Many studies have now shown that the majority of patients want to participate in clinical decisions about medical treatments they might receive. As a result, information materials are being developed to help consumers and doctors work together to reach satisfying treatment decisions which are based on the best available evidence and also reflect the individual patient's needs and preferences about the treatment options. Very little is known, however, about whether consumers also want to particip ....Many studies have now shown that the majority of patients want to participate in clinical decisions about medical treatments they might receive. As a result, information materials are being developed to help consumers and doctors work together to reach satisfying treatment decisions which are based on the best available evidence and also reflect the individual patient's needs and preferences about the treatment options. Very little is known, however, about whether consumers also want to participate in decisions about whether to have a medical test. Tests can be trivial, such as a blood or urine test, or quite major and invasive, such as a biopsy or a colonoscopy. People considering a medical test might want to know the answers to the following questions: What is my chance of having the disease being tested for? If the test result is positive what is the chance I have the disease? If the test result is negative what is the chance I have the disease anyway? How will the test result influence treatment of my condition? What are possible side-effects of the test? Generally information materials about medical tests only describe the test itself, and do not contain the information people need to answer these questions. Even doctors may not have to hand the data needed to answer these questions. Yet without this information, consumers cannot make truly informed and rational choices about whether to have the test. This project aims to find out whether consumers want to participate in decisions about medical tests, what information they would want to do this, and to develop and trial information materials and a communication aid for a small number of breast cancer tests. We will use tests for diagnosing breast cancer as our model but we anticipate the work will be applicable across a wide range of medical tests.Read moreRead less