Telling the truth to seriously ill children. This project aims to investigate how doctors and parents give information to young children who have serious medical conditions. Ethical and clinical guidelines agree that even young children should be given open, accurate and honest information in a developmentally appropriate way. However, doctors find this a challenging and uncertain area, and children do not receive open communication. This project aims to understand factors influencing the doctor ....Telling the truth to seriously ill children. This project aims to investigate how doctors and parents give information to young children who have serious medical conditions. Ethical and clinical guidelines agree that even young children should be given open, accurate and honest information in a developmentally appropriate way. However, doctors find this a challenging and uncertain area, and children do not receive open communication. This project aims to understand factors influencing the doctors and parents‘ real-life decisions of what and when to tell a child; undertake a practical ethical analysis; and produce practical guidelines and educational resources for parents and doctors. This project intends to improve the experience for young children being treated for serious medical conditions and their families.Read moreRead less
Defining disease: Addressing the problem of overdiagnosis. This project will investigate and define the limits of physical disease, to answer questions about when a presentation is a disease, and when it is simply a risk factor or mild condition. The ensuing account of disease will make a practical contribution to growing international concern about asymptomatic people being diagnosed and treated for conditions that will not cause any health problems ("overdiagnosis"). The research will provide ....Defining disease: Addressing the problem of overdiagnosis. This project will investigate and define the limits of physical disease, to answer questions about when a presentation is a disease, and when it is simply a risk factor or mild condition. The ensuing account of disease will make a practical contribution to growing international concern about asymptomatic people being diagnosed and treated for conditions that will not cause any health problems ("overdiagnosis"). The research will provide normative grounds for evaluating disease claims. Results will reduce the harm caused by people receiving treatment that they do not require, make a practical contribution to debates about the scope of health care, and yield findings that can help to reduce the cost-burdens associated with overdiagnosis.Read moreRead less
The ethics of altering children. Parents sometimes request surgery or drug therapy to change a child's physical appearance. This project will provide ethical guidance to doctors and policy makers about ethically appropriate ways to respond to such requests.
Discovery Early Career Researcher Award - Grant ID: DE240100386
Funder
Australian Research Council
Funding Amount
$435,875.00
Summary
Anti-racist neuroethics for epistemic justice in mental health research. Racial/ethnic minorities are underrepresented in brain and mental health (BMH) research, risking inadequate healthcare for the 9.5 million minorities in Australia. With the $73 billion annual cost of BMH disorders to the country, all Australians should equally benefit from BMH research. This project aims to develop recommendations to make BMH research more diverse and inclusive. It will audit representation of minorities in ....Anti-racist neuroethics for epistemic justice in mental health research. Racial/ethnic minorities are underrepresented in brain and mental health (BMH) research, risking inadequate healthcare for the 9.5 million minorities in Australia. With the $73 billion annual cost of BMH disorders to the country, all Australians should equally benefit from BMH research. This project aims to develop recommendations to make BMH research more diverse and inclusive. It will audit representation of minorities in Australian BMH publications and will conduct surveys, interviews, and workshops with scientists to determine institutional barriers to the inclusion of and engagement with minorities in research. This project will draw from concepts of epistemic justice and anti-racism to develop ethical frameworks for BMH racial equity.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
Discovery Early Career Researcher Award - Grant ID: DE150101390
Funder
Australian Research Council
Funding Amount
$363,536.00
Summary
Invasive Synthetic Biomedical Brain Device: Ethical and Policy Implications. The use of novel, invasive, synthetic, biomedical brain technologies such as predictable brain devices, 3D printed biomaterials, additive-bio-fabricated materials, and drug delivery systems have raised unprecedented ethical issues for research. Given the therapeutic potential and high risk of harm associated with synthetic biomedical applications, it is critical to identify the ethical issues before these novel applicat ....Invasive Synthetic Biomedical Brain Device: Ethical and Policy Implications. The use of novel, invasive, synthetic, biomedical brain technologies such as predictable brain devices, 3D printed biomaterials, additive-bio-fabricated materials, and drug delivery systems have raised unprecedented ethical issues for research. Given the therapeutic potential and high risk of harm associated with synthetic biomedical applications, it is critical to identify the ethical issues before these novel applications are widely used in human clinical trials. This project aims to explore how research trial guidelines can address the ethical issues raised by these new brain applications.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
Reproductive Autonomy in the Genomic Age. This project aims to provide a better way to help people to think and reflect about new genetic tests in pregnancy. These tests are on the rise. Yet they are occurring in a setting that is overly individualistic and underplays problems that can come from increased information and choice. This project will involve an interdisciplinary team to generate new theoretical and practical knowledge to re-frame the concept of 'reproductive autonomy'. Expected outc ....Reproductive Autonomy in the Genomic Age. This project aims to provide a better way to help people to think and reflect about new genetic tests in pregnancy. These tests are on the rise. Yet they are occurring in a setting that is overly individualistic and underplays problems that can come from increased information and choice. This project will involve an interdisciplinary team to generate new theoretical and practical knowledge to re-frame the concept of 'reproductive autonomy'. Expected outcomes include new bioethics knowledge, innovations in research methodologies, new data and recommendations for practice. The project will provide benefits by generating the first analysis of how reproductive autonomy needs to change to ensure new tests in pregnancy are offered and used well.Read moreRead less
Neuroethics: The Practical and the Philosophical. The benefits of the project are twofold: practically, it will enable us to better regulate, personally and socially, the new technologies that the sciences of the mind are already producing; intellectually, it will enable us to better understand human agency in the light of the new knowledge generated by the sciences of the mind, and it will help to maintain Australia's reputation as an international leader in applied ethics and in philosophy of ....Neuroethics: The Practical and the Philosophical. The benefits of the project are twofold: practically, it will enable us to better regulate, personally and socially, the new technologies that the sciences of the mind are already producing; intellectually, it will enable us to better understand human agency in the light of the new knowledge generated by the sciences of the mind, and it will help to maintain Australia's reputation as an international leader in applied ethics and in philosophy of mind and agency.Read moreRead less
Trust me - I'm a researcher: The role of trust in the human research enterprise. We assume a relationship of trust between researchers and their participants. But what does this mean for researchers and participants, and for the ethics committees who make judgements about the ethics of the research? This project will benefit prospective research participants by providing them with information about how to determine the trustworthiness of researchers and what is expected in a trusting research re ....Trust me - I'm a researcher: The role of trust in the human research enterprise. We assume a relationship of trust between researchers and their participants. But what does this mean for researchers and participants, and for the ethics committees who make judgements about the ethics of the research? This project will benefit prospective research participants by providing them with information about how to determine the trustworthiness of researchers and what is expected in a trusting research relationship. It will also benefit researchers in understanding how to strengthen trust in research relationships and articulating how ethics committees can make well-founded judgements about the trustworthiness of researchers. The findings will also contribute to training programs for both ethics committees and researchers. Read moreRead less