Research Grants

Grants starting 2015

Title

Details

Project Summary

Aboriginal Communities as Sites of Experiment: The Making and Unmaking of Indigenous Research Subjects in the Twentieth Century

ARC discovery project grant

DP150102810

 

Investigator/s: Anderson W., Johnson, M.

Duration: 2015-17

Funding: $203,967

How did Aboriginal Australians come to be treated as research subjects in the twentieth century? This project aims to examine six exemplary cases where Aboriginal communities became sites of medical investigation and scientific experiment. It is designed to explore different patterns of sympathy and exploitation, intimacy and objectivity, in the interactions of scientists and Aboriginal people. The sites range from Brewarrina to Hermannsburg, Palm Island and Groote Eylandt; the time period is from the 1910s through the 1990s. The research will endeavour to translate the history of Australian science into a series of Indigenous local histories. Such an approach is unprecedented and is expected to serve as a model for the study of the entanglements between science and Indigenous peoples.

Are we prepared for a genomics revolution? Understanding the Australian public’s expectations of personal genomics

ARC discovery project grant

DP150100597

Investigator/s: Metcalfe, Sylvia A; Newson, Ainsley J; Gray, Kathleen; Terrill, Bronwyn N; Gaff, Clara L; Middleton, Anna; Wilson, Brenda J

Duration: 2015-17

Funding: $582,200

This multi-disciplinary project aims to be the first to explore the Australian public's awareness of new developments in genetic science that allow healthy individuals to access their own genetic makeup. Called 'personal genomics', this broad group of genetic tests can be used for a variety of purposes that include ancestry, paternity, sporting ability and health. These tests are developing at a rapid rate yet little is known about why, how and where they are used by the public. This project will employ a mixed methods approach to examine how the public might engage with this new technology. The research aims to help define educational strategies and supports and thereby to inform national policy for personal genomics.

Improving decisions about the funding of high cost cancer medicines in Australia

NHMRC project grant

App 1080673 

Investigator/s: W Lipworth, I Kerridge, G Salkeld, I Olver, D Isaacs, S Pearson

Duration: 2015-17

Funding: $549,492 over 3 years

In this project, we will address the question how cancer medicine funders can manage the intensifying economic and ethical challenges that they face. We will develop recommendations and guidelines for funders that will help them make their processes and decisions more legitimate in the eyes of all key stakeholders including patients, the general public, governments and pharmaceutical companies. We will suggest strategies that could add to those used by the Pharmaceutical Benefits Advisory Committee, the Hospital and Health Service Drug and Therapeutics Committees and pharmaceutical companies, when making decisions about "compassionate" access to medicines. We will also consider ways in which these guidelines and recommendations might be generalised to the funding of other kinds of medicines and health technologies. In so doing, this research will strengthen Australian medicines funding processes and maintain Australia’s status as a world leader in assessing the value of new technologies.

Biobank Networks, Medical Research and the Challenge of Globalisation

NHMRC project grant

App 1083980 

Investigator/s: Kerridge I, Stewart C, Cumming R, Easteal S, Kowal E, Waldby C, Lipworth W, Critchley C, Anderson W, Marton P.

Duration: 2015-17         

Funding: $763,644 over 3 years

Biomedical and public health research increasingly relies on data linkage, the molecular biosciences and large-scale biobanks that store data and samples from healthy donors or patients. Over the past decade, international networks of biobanks have been established in order to maximise biobank utility and sustainability. This globalization raises numerous challenges, mainly because research is less constrained by institutional, academic, cultural or national boundaries.  These challenges relate to consent, commercialisation, privacy, treatment of tissue, return of results, benefit sharing, data and tissue “ownership”, funding arrangements, technical standardization, quality control, scientific ownership, intellectual property, and regulatory harmonization. This study will provide evidence to inform the development of ethically rigorous and culturally informed strategies to ensure that Australians contribute to, and benefit from, international biobank networks. It will be the first systematic, Australia-wide study of the challenges raised by the globalization of research and the formation of biobank networks.

Can One Health strategies be more effectively implemented through prior identification of public values?

NHMRC project grant

App 1083079 

Investigator/s: Degeling C, Gilbert G, Wilson A, Kerridge I, Ward M, Stewart C

Duration: 2015-17

Funding: $565,106 over 3 years

Nonhuman animals are the source of 70% of emerging infectious disease (EID) threats to human health. EIDs are characterized by their complexity and uncertainty as to their causes, consequences and likely solutions. The occurrence and cross-species transmissibility of EIDs hinge on changes in land use, high volume global trade and travel, and animal husbandry practices. “One Health” is a recently established global approach to EIDs that acknowledges the interdependence of human, animal and ecological health, and aims to increase capacity for disease-risk prediction and effective intervention. This project will (i) identify potential socio-political and ethical barriers to effective EID policy implementation; (ii) establish the principles and priorities that communities believe should underpin policy responses to EIDs and EID risks; (iii) generate a One Health statement of principles and values to support decision-making and communication around EIDs, and facilitate legislative and policy approaches to EID control. 

Grants starting 2014 and earlier

Grant Title

Grant Details

Project Summary

German Mixed Race Diasporas in Southern Hemisphere Mandates: Science, Politics and Identity transformation

ARC Future Fellowship FT130101715

Investigator: Winter C

Duration: 2014-17

Funding: $620,370 over 4 years

This archival and oral history project advances knowledge of colonial and post-colonial identity formation in the global South. It shows how German scientific studies of race, especially among the mixed populations of the Pacific, shaped local identity politics and informed nationalist and decolonising projects. It offers a new context for understanding the nature of Australian race relations, especially our attitudes toward race mixing and assimilation in regard to our region. This research will greatly expand our understanding of German racial thought in the twentieth century, showing how German engagement with the global South influenced Weimar, Nazi, and post-war impressions of humanity and ideas about race.

Social Values, Ethics and Politics in Health Technology Assessment

NHMRC Career Development Fellowship APP1063569

Investigator: Lipworth W

Duration: 2014-17

Funding: $404,884 over 4 years

Over the next 4 years Wendy will lead four research projects aimed at making social values and ethical considerations more explicit in health technology assessment (HTA), preventing and managing conflict of interest in HTA, improving HTA in the context of pharmacogenomics and “personalised medicine”, and understanding and managing prescribing outside the bounds of HTA recommendations. The overall aim of these projects is to make HTA more robust, equitable, coherent and socio-politically justifiable.

Social justice and pet ownership: A qualitative inquiry to improve population health and advance public health ethics

Canadian Institutes of Health Research, Open Operating Grant

Investigators: Rock M, Adams C, Degeling C

Duration: 2014-16

Funding: $342,756 over 3 years

This project advances an established research program on how small differences to well-being are generated and perpetuated in everyday life. Pets anchor our investigations of small differences that carry major consequences for population health. In this project, experiences of pet ownership among lower-income Canadians will serve as a prism for redressing health inequity and for theorizing social justice.

Addressing conflicts of interest in public health and biomedicine: enhancing professional integrity and safeguarding the public’s health

NHMRC Project Grant APP1059732

 

Investigators: Lipworth W, Kerridge I, Komesaroff P, Stewart C, Olver I

Duration: 2014-16

Funding: $564,553 over 3 years

Health practitioners, researchers and policymakers have many different professional and social roles. Each of these is associated with a set of “interests”, which can at times conflict, leading to “conflicts of interest” (COI). COIs can create significant harms: distorting research, education, policymaking and practice and undermining public confidence in health and biomedicine. It is crucial, therefore, that we have clear ways of recognising, assessing and managing COIs. While most journals, professional associations and universities have developed policies and procedures for assessing and managing COIs, they remain an ongoing problem for public health and biomedicine. This project will use both empirical research and theoretical analysis to develop and test a novel framework for managing COI that is sophisticated enough to account for the complexities and realities of contemporary health and biomedicine and therefore more likely to be accepted and integrated into practice. The key outcome from this project will be an analytic framework that policymakers and practitioners can use to detect, assess and manage their own or others’ conflicts of interest—both pecuniary and non-pecuniary and both individual and organisational.

Nationally shared curriculum resources for veterinary undergraduate learning in animal welfare and ethics

Australian Office of Teaching and Learning grant

Investigators: McGreevy P (Project Leader), Fisher A, Phillips C, Lloyd J, Collins T, Degeling C, Freire R, Hazel S, Stafford K, Fawcett A

Duration: 2014-

Funding: $378,000 over ? years

As recent debates within Australia have clearly demonstrated, animal welfare and ethics is of growing interest across the Australian community. Veterinary schools increasingly need to address these issues if their graduates are to be in a position to help these industries respond to broader community concerns. This project will develop a new curriculum design for Animal Welfare and Ethics that meets student and employer needs and provides the basis for ongoing personal and professional development for students. Using an online portal, it will build on medical ethics programs to re-position and re-shape veterinary courses so that graduate veterinarians are competent in Animal Welfare and Ethics. The new curriculum will not only introduce learning innovations, but also facilitate connections between the existing diverse curricula at all eight Australasian Veterinary Schools and, most importantly, dialogue between students from the various schools, promoting consistency in Animal Welfare and Ethics teaching and how assessment focuses learning.

Human Animal Research Network

University of Sydney Research Networks Scheme (SyReNS)

Investigators: Probyn-Rapsey F, Belov K, Black C, Degeling C, Fawcett A, Irvine R, Johnston J, Lea T, Kindt J, Michael M

Duration: 2014-15

Funding: $40,000

The Human Animal Research Network is an important part of the rise of Human Animal Studies (HAS) both in Australia and internationally. Human Animal Studies is an emergent field of study that serves as a bridge between the social sciences and the sciences, and it reflects the fact that human interdependence with nonhumans is now at the forefront of political, socio-economic and medical agendas in many countries around the world. Recent events and controversies surrounding Hendra virus, flying foxes, avian flu and live exports highlight the fact that significant problems emerge when public understandings, scientific innovation and legal frameworks are out of step with each other.  The disciplines of human-animal studies, law, veterinary science, cultural studies and public health meet at this point ­–HARN is uniquely placed to respond to these questions because it brings social and scientific problem solving together. Our project challenges the silo effect where ‘human society’ is studied in one part of the University, while animals are studied elsewhere.  This approach and structure simply does not work for research that is premised upon human animal interaction (not separation).

National Breast Cancer Foundation Think Tank Grant

Investigators: Thorne H, Devereux L , Fleming J

Duration: 2014

Funding: $9.552

This initiative seeks to develop a strategic protocol to develop and evaluate comparative models of best practice and address the emerging ethical, legal and practical complexities in the management of disclosure of incidental findings and individual research results. Given the rapid advances and application of whole genome sequencing and other high throughput research efforts in cancer translational research, the potential implications for clinical practice and genomic research involving cancer patients and the general public (potential donors) as contributors to biobanks need to be identified and effectively responded to. This has been reconfirmed in recent regulatory responses nationally and internationally with varying levels of success. The team will take a mixed methods approach to build on evidence from recent research to inform policy and practice, informed by wider community engagement, facilitated by biobanks as trustees to assist clinicians, researchers, clinical geneticists and regulators in their shared responsibilities to manage the complexities disclosure effectively and in an ethically robust way.

Building capacity for clinical ethics support Australia: Evidence-based recommendations for integrating ethics into healthcare institutions

University of Sydney Bridging Support Grant

Investigators: Jordens C, Newson A, Kerridge I, Doran E, Stewart C.

Duration: 2014

Funding: $30,000

 

Future autonomy, current technology: Ethics and next generation gene sequencing in children

Sydney Medical School and School of Public Health New Staff grant

Investigator: Newson A

Duration: 2014

Funding: $26,958

This project examines the ethics of using next generation DNA sequencing (NGS), a new method of genetic diagnosis, in Australian children. With NGS, a human genome will take less than a day to sequence and will cost less than US$1,000. However ethical issues will arise, particularly in the use of this technology in those who cannot consent to its use. Through preparation of detailed clinical case studies and an analysis of several relevant ethical issues, this project will provide a baseline ethics analysis of the use of NGS in children.

Tuberculosis control: From discovery to public health practice and policy

NHMRC Centre for Research Excellence, application ID 1043225

Investigators: Britton W, Marais B, Marks G, Sintchenko V, Triccas J, Saunders B, Kerridge I, Bennet B, Gilbert L

Duration: 2013-18

Funding: $2.5 million over 5 years

 

Consent communication and decision-making in early-phase paediatric cancer trials

Cancer Institute NSW, Translational Cancer Research Centre Grant

 

Investigators: O’Brien T, Kodish D, Joffe S, Kerridge I, Stewart C, Anazodo A, Alvaro F, Wakefield J, Drew D, Alessandri A, Deakin C

Duration: 2013-15

Funding: $300,000 over 3 years

 

Implementing One Biosecurity: Public Values and Emerging Infectious Disease in Australia

Sydney School of Public Health Collaborative Research Scheme

 

Investigators: Degeling C, Gilbert L, Wilson A, Stewart C, Kerridge I

Duration: 2013-14

Funding: $4,000 over 2 years

Australian government responses to emerging infectious diseases, such as Hendra and highly pathogenic avian influenza, will soon be articulated through new Biosecurity legislation. Concerns about the acceptability and applicability of this legislative framework can only be managed equitably and effectively if we acknowledge the political impact of scientific uncertainty and individual values and preferences. The Biosecurity Bill contains operational guidelines, statutory rights and juridical review mechanisms, intended to protect against arbitrary restriction of individual rights -commensurate with public health and the national interest.  As a first step towards a sustained program of research we will be examining important scientific and public interest questions about the conceptual, legal and moral adequacy of these measures.

The internationalisation of biobanks and biomedical research: a multidisciplinary critique of its implications for public health

Sydney School of Public Health Collaborative Research Scheme

Investigators: Fleming J, Kerridge I, Anderson W, Cumming B, Waldby C, Stewart C

Duration: 2013-14

Funding: $4,000 over 2 years

 

Sydney Intellectual History Network

University of Sydney Research Network Scheme

Investigators: Millam J, Aspromourgos T, Borghese F, Caine B, Ferng J, Fitzmaurice A, Gaetens M, Gal O, Gaukroger S, Helbig D, Karalis V, Kerridge I, Nassar D, Redding P, Sadurski W, Sevel M, Sluga G, Waldow A, Walton K

Duration: 2013-14

Funding: $300,000 over 2 years

 

Network for Bodies, Organs and Tissues

University of Sydney Research Network Scheme

Investigators: Stewart C, Anderson W, Cashman P, Cooper M, Griffiths P, Hooker C, Jordens C, Kerridge I, Lupton D, Magnusson R, Michael M, Pols H, Race K, Salkeld G, Savell K, Scott Brand R, Shewan L, Waldby C

Duration: 2013-14

Funding: $300,000 over 2 years

 

The Ethics of Prevention and Health Promotion

NHMRC Career Development Fellowship APP1032963

Investigators: Carter SM

Duration: 2012-15

Funding: $391,076 over 4 years

This NHMRC Career Development Fellowship is focused on the ethics of prevention and health promotion, with a special interest in three main areas: 1) the ethics of health promotion; 2) normative dimensions of paternalism and ‘nanny statism’; 3) conceptualisation and normative evaluation of overdetection, overdiagnosis and overtreatment. Each of these subprojects involves local and international collaborators.

Evaluating cancer screening: context, evidence, values and ethics

NHMRC Project Grant 1023197

Investigators: Carter SM, Rychetnik L, Barratt A and Kerridge IH

Duration: 2012-15

Funding: $552,350 over 4 years

In this project we are addressing the broad question: when is it ethically justifiable to provide cancer screening? Despite accumulating evidence about benefits and harms, there is acrimonious debate over who should be screened for which cancers at what ages. This is partly because evidence is incomplete and complex, but there are other reasons: evidence must be interpreted, and interpretation relies on implicit factors such as context, values, and ideas about how to judge what is right. We are studying these implicit factors in three Australian cases: screening for cervical cancer, breast cancer and prostate cancer in Australian adults. This project is supporting a large number of empirical sub-projects: studies of how experts reason about breast cancer screening (Lisa Parker, PhD candidate); how experts reason about cervical screening (Jane Williams, PhD candidate); how General Practitioners manage the challenge of Prostate-specific antigen ( PSA) testing (Kristen Pickles, PhD candidate); what citizens think should constitute consent to PSA testing (Chris Degeling, senior postdoctoral fellow); the extent of overdiagnosis in breast cancer screening (Gemma Jacklyn, PhD candidate). Stacy Carter is leading work that synthesises insights across these case studies, including an explanation of the tensions over cancer screening evidence (with the whole team), and work on the conceptualisation and normative evaluation of overdiagnosis (with Chris Degeling and Alex Barratt). This project will continue until 2015-16 and support the development of further projects related to overdiagnosis and overtreatment.

Ensuring the utility and sustainability of tissue banks. Supporting translational research through informed legislation and community participation

NHMRC Project Grant 1029929

Investigators: Kerridge I, Stewart C, Marlton P, Otlowski M, Nicol D, Critchley C

Duration: 2012-14

Funding: $552,350 over 4 years

 

The natural history of unassisted smoking cessation in Australia

NHMRC Project Grant 1024459

Investigators: Dunlop S, Chapman S, Carter SM, Freeman B

Duration: 2012-14

Funding: $318,510 over 3 years

The majority of ex-smokers who successfully quit have done so without using pharmaceutical or counselling support. This is a grounded theory study with smokers who have quit with and without forms of assistance, aiming to produce a new theory of the process of quitting, and an insight into the extent to which assisted or unassisted quitting are similar or different. The qualitative data gathering and analysis on this project is being completed by Andrea Smith, under the supervision of Stacy Carter. The results will be published in the peer reviewed literature and will contribute to Andrea’s PhD thesis.

Disease and the modern self: becoming autoimmune

ARC Discovery Project Grant DP120100861

Investigators: Anderson, W, Mackay, IR

Duration: 2012-14

Funding: $145,000 over 3 years

This will be the first historical analysis of concepts of autoimmunity. A conceptual history of a disease category, the book will also incorporate patient experience, scientific ideas about the immunological 'self', and an examination of the connections and articulations of research laboratories and hospital clinics in the
twentieth century.

 

Sydney Infectious Diseases and Biosecurity Research Network

University of Sydney Research Network Scheme

Investigators: Sorrell T, Bennett B, Booy R, Crawford J, Dwyer D, Gilbert G, Giles F, Holmes A, Holmes E, Hossain A, Iredell J, Jones C, Kerridge I, Kesson A, Marais B, Sintchenko V, Ward M, Werder O.

Duration: 2012-13

Funding: $200,000 over 2 years

 

NHMRC Centre for Research Excellence in Critical Infection

NHMRC Centre for Research Excellence Grant 1001021

Investigators: Iredell JR, Sorrell TC, Gilbert GL, Kerridge I, Booy R, Dwyer DE, Webb SAR, Sintchenko V, Jones C, Bennett B

Duration: 2011-15

Funding: $2,500,000 over 5 years

The project investigates life threatening infections such as septic shock, severe pneumonia and encephalitis. It also studied the ecology of major infections, including antibiotic resistance infections and the ethical and legal issues associated with diseases affecting the most seriously ill.

Strengthening frontline clinicians’ infection control: A multimethod study to reduce MRSA infection and transmission

NHMRC Project Grant 1009178

Investigators: Iedema R, Hooker C, Gilbert L, Sullivan M, Jorm, C.

Duration: 2011-14

Funding: $829,914 over 3 years

This innovative project seeks to change health care worker (‘HCW’) beliefs and practices about infection control in order to lower hospital-acquired infection (‘HAI’) rates. This aim is realized by:

➣ continuous surveillance of methicillin resistant Staphylococcus aureus (‘MRSA’) colonization and infection rates; rapid identification, by routine strain typing, and rapid reporting of MRSA transmission events, and

➣ providing feedback to frontline clinicians combining MRSA reporting with ‘video reflexive ethnography’ and hand-washing audit data targeting HCWs’ infection control awareness.

Southern racial conceptions: comparative histories and contemporary legacies

ARC Laureate Fellowship FL110100243

Investigator: Anderson W

Duration: 2011-16

Funding: $2,120,561

This project aims to reveal intense scientific debate about what it meant to be human in the southern hemisphere during the twentieth century, placing Australian racial thought in a new context. Through comparative study, it shows the distinctive character and scope of racial ideas in southern settler societies, and assesses their global impact.

Novel insights into how health is generated in urban settings: A ‘natural experiment’ study of off-leash areas

Canadian Institutes of Health, Strategic Population Health Intervention Research

Investigators: Rock M, McCormack G, Degeling C, Greenwood-Lee J, Massolo A, McLaren L

Duration 2011-14

Funding $197,783 over 4 years

 

Most research in health inequity sets out to learn from and redress extreme contexts and distress e.g., poverty, food insecurity, race discrimination or vulnerable populations. We take a different approach. We investigate the everyday generation of small differences to well-being in ordinary urban contexts. Taking insights from complexity theory and population health theory, we focus on how small differences play out in ways that magnify and widen, affecting daily decisions and how different social groups view each other. We use companion animals (pets) as the vehicle to make this examination. We propose to develop a research partnership with a novel public health workforce – city bylaw officers, veterinarians and pet-oriented charitable organizations. Outcomes will be new strategies for tacking health inequality, new interdisciplinary platforms of inquiry, and new ways for making civil society more equitable in more people’s everyday encounters.

Reconceptualising health promotion: the role of values, ethics and evidence in obesity intervention

NHMRC Project Grant 632679

Investigators: Carter SM, Hooker C, Kerridge I, Rychetnik L.

Duration: 2010-12

Funding: $467,950 over 3 years

This project focuses on the place of ethics and values in health promotion, using interventions in ‘obesity’ as a case study. It has generated work on the values held by health promotion practitioners, the ethics of health promotion, and the nature of evidence in health promotion. Although funding has ended, work from this project is ongoing.

Calling the tune? Investigating corporate influences on media reporting of health

NHMRC Project Grant 632840

Investigators: Chapman S, Kerridge I, Jordens C, Bacon W, Bonfiglioli C, Sweet M

Duration: 2010-12

Funding: $445,500 over 3 years

Health-related news is a major source of health information for many people, and it is crucial that this information is balanced and accurate. Journalists may draw upon a range of sources, including information derived from commercial organizations. Such relationships may introduce bias into reporting, particularly if journalists receive “gifts” in various forms (press releases, funding to attend conferences, prizes etc). This project will examine and evaluate the relationships between Australian journalists and health-related industries (pharmaceutical, medical devices/diagnostics, complementary medicines, food and alcohol) in order to determine the extent to which, and ways in which, these relationships influence the health-related information received by health professionals and the Australian public. The project aims to inform strategies to improve industry and journalistic policy and practices.

Implementation and sustainability of non-surgical intervention for dental caries in general dental practice

NHMRC Project Grant 632715

Investigators: Evans W, Blinkhorn A, Carter SM

Duration: 2010-12

Funding: $376,125 over 3 years

This project built on a previous NHMRC funded RCT (402466, 2005-08) of implementation of evidence-based protocols for preventive and non-invasive care of tooth decay (alternatives to ‘drilling and filling’ teeth) in general dental practice in Australia. The earlier RCT demonstrated that such treatments could be implemented successfully with positive outcomes (fewer fillings). This new NHMRC-funded project explored how the implementation was managed, how it affected the practices’ personnel and patients, and how it was sustained. The project offered a unique opportunity to gain new insights into the transfer of knowledge into general dental practice, and to further re-orient dental practice in Australia towards non-invasive management of tooth decay.

The project was completed in 2012, and led to the award of Alexandra Sbaraini’s PhD without emendations. Her PhD produced a new grounded theory of how private dental practices come to be oriented towards prevention, as well as eight peer reviewed publications; more information

Bioethisphere: A web-based means for reflecting on values through various disciplines

Thyne Reid Charitable Trust

Investigators: Macneill P, Kerridge I, Little JM, Mills C, Jordens C, Hooker C

Duration: 2010

Funding: $56,000

The bioethisphere is an innovative web-based tool for facilitating learning in ethics and values through exploration of a sphere comprising 10 ‘wheels’, each of which presents a perspective relevant to ethics (religion, philosophers, schools of philosophy, bioethics, clinical ethics, linguistics, social sciences, art and humanities, economics, and law). The bioethisphere makes information on ethics and related disciplines available to students and teachers; it provides a means for interactivity and self-learning, and mechanisms for teachers to add in material to adapt the instrument for their own learning situations. The bioethisphere is appropriate for learning in many different situations: with secondary school students, learning in the life sciences and humanities, health professional students, and health professionals, and for interested members of the public.

Risk, capacity and making decisions about Community Treatment Orders

NSW Health

Investigators:  Robertson M, Boyce P, Carney T, Rosen A, Cleary M, Hunt G, O’Connor N, Ryan C.

Duration: 2009-12

Funding: $115,624

The two customary justifications for ‘involuntary’ or ‘coercive’ treatment of mental illness are either: that without treatment the mentally ill person might be likely to seriously harm themselves or others, or that the person lacks capacity to refuse treatment but that treatment would be in the person’s bests interests and consented to by a substitute decision-maker.  These concepts of ‘risk’ and ‘capacity’ are complex in the setting of community mental health care as levels of acuity and clarity of risk are often viewed through different prisms by diverse stakeholders. The lack of any valid consensus on models of ‘risk’ and ‘capacity’ often complicates clinical and legal decisions relating to the use of involuntary community treatment orders (CTOs).
This project aimed (i) to identify the determinants of clinical decision-making about involuntary psychiatric treatment in the community as administered under the Mental Health Act (NSW) 2007 (‘CTOs’), (ii) to identify how mental health professionals, consumers, carers and Mental Health Review Tribunal (MHRT) members conceptualise ‘risk’ and ‘capacity’ in the context of CTOs, and how these concepts influence CTO decisions, (iii) to develop comprehensive models of ‘risk’ and ‘capacity’ that serve as a basis to improve decision-making, and (iv) to describe the lived experiences of people subject to CTOs and carers and to use these findings to inform improvements to clinical and legal decision-making about CTOs.

Developing clinical ethics capacity in NSW through partnership

NSW Health             

Investigators: Kerridge I, Stewart C, Carter SM, Jordens C, Hooker C, Mills C, Cheung P, Hu W, Little JM, Letts J, Mitchell J, Walters W, Clout T

Duration: 2009-10

Funding: $459,384 over 2 years

A collaboration between NSW Health, the Centre for Values, Ethics and the Law in Medicine (VELiM) and the Royal Hospital for Women, South Eastern Sydney Area Health Service is to examine how health professionals make decisions of moral import and what resources they use to guide their decision-making. This will provide the evidence needed to develop rigorous, evidence-based resources and processes that support clinical ethics applicable in other NSW hospitals, are relevant to the NSW setting, and have clinical utility. The project will determine: the kinds of ethical issues that arise in the context of patient care in NSW; how much ethical discussion happens now in clinical practice, of what kind, and between whom; potential entry points for normalising or ‘routinising’ clinical ethics discussion in daily practice; situations where prospective ethics review might be warranted; the degree to which clinical ethics resources are desired and needed by health professionals and health systems; and the range of clinical ethics resources that could/should usefully be made available within the NSW health system. This, in turn, will provide an evidence base for recommendations for ways forward in developing clinical ethics capacity in NSW, and will inform the subsequent development and maintenance of specific clinical ethics resources, as appropriate.

Growing up with cancer: A mixed method examination of how cancer influences the transition from adolescence to adulthood

ARC Linkage Grant LP0883632

Investigators: Kerridge I, Jordens C, Smith K.   AIs: Bennett D, Patterson P

Duration: 2008-11

Funding: $325,920 over 4 years

Growing Up with Cancer is an ARC Linkage project developed by VELiM and CanTeen to explore the impact of cancer on young people’s transition from adolescence to adulthood. Young people (in and out of treatment) will participate in research interviews and surveys, and produce a self portrait with the support of a digital media artist. Qualitative methods will be used to examine the perspectives of parents, health care professionals, and healthy young people. In addition to disseminating project findings via peer-reviewed journals, the project will host an exhibition of young people’s self portraits and produce a range of educational materials.

Ethical and legal issues surrounding the decision-making process for donating and banking Umbilical Cord Blood

NHMRC Project Grant 512416

 

 

Investigators: Kerridge I, O'Brien T, Stewart C, Jordens C, Nassar N, Ankeny R

Duration: 2008-10

Funding: $402,000 over 3 years

Over the past decade transplantation using Umbilical Cord Blood (UCB) stem cells has been shown to be as effective as transplants using bone marrow or peripheral blood stem cells. UCB donation and storage has, however, raised a number of important scientific and ethical concerns, including issues regarding ownership of the blood, the processes for obtaining consent for donation and storage, donor and recipient confidentiality, the ethics and science of commercial or ‘private’ banking, and social justice issues relating to equity of access and equity of care. This research will provide the first comprehensive description of Australian practices for obtaining consent for UCB donation and banking. It will provide a thorough legal analysis of the Australian UCB donation and banking system. The results will provide the basis for recommendations for law reform in this area and for changes to institutional practices surrounding education and consent and may ultimately contribute to increases in donations to public UCB banks from under-represented populations.

Human Oöcytes for Stem cell Research: Donation and Regulation in Australia

ARC Linkage Grant LP0882054

Investigators: Waldby C, Kerridge I, Skene L

Duration: 2008-10

Funding: $215,000 over 3 years

This project investigates the social and bioethical problems posed by oöcyte donation for stem cell research. Oöcyte donation is both onerous and risky for women who choose to donate and are in short supply, both in Australia and globally. While an extensive, international body of research and community debate has informed the regulation of embryo donation, there is no comparable body of research regarding oocyte donation. This project will explore the meaning of oöcyte donation for different stakeholders in the stem cell field, including donor populations, scientists, clinicians, bioethicists, and policy makers. It will investigate the effects of the regulatory environment on the decision to donate, and provide an evidence base for future stem cell policy.

Restoring Value(s) to medicine: An examination of the scientific and ethical foundations of medicine

Medical Foundation Grant, University of Sydney

 

Investigators: Kerridge I, Little M, Jordens C, Hooker C, Hu W, Macneill P

Duration: 2008-10

Funding: $402,665 over 3 years

Many critics of modern medicine say that medical practice has been depersonalised, and that the original ethical purposes of health care have been forgotten. Medical rationing, litigation, medical scandals and frequent complaints are all symptoms of social discontent with medicine's detachment from its original concerns with people's well-being and the relief of suffering. A tension is evident between the desire to reactivate medicine's values, the desire for scientific progress and the conquest of disease, and the impossibility of public funding for increasingly expensive medical technologies. Professor William Fulford, UK, has developed an approach to medical education that he calls values-based medicine (VBM). It involves teaching students to recognise and respect the legitimate preferences that patients and their families may have in a mixed society. - We propose to develop a different approach to VBM. We are identifying the values that experienced clinicians bring to the practice of medicine by way of their interactions with patients and families, and capture these values in a series of questions. We will refine these questions in collaboration with the Office of Medical Education, through systematic development, using focus groups of clinicians, patients and their carers. When the questions are validated, we plan to use them in teaching programs that will apply to all segments of the curriculum at the University of Sydney.

Multiple Perspectives on Sexuality and Intimacy Post-Cancer, Leading to the Development and Evaluation of Supportive Interventions

ARC Linkage Grant LP0883344

Investigators: Ussher J, Perz J, Gilbert E, Batt GM, Sundquist KJ, Wain GV, Kirsten LT, Hobbs K.   AI: Kerridge I

Duration: 2008

Funding: $112,098 over 1 year

Sexuality and intimacy are key aspects of individuals’ quality of life that are detrimentally affected by cancer, with significant proportions of couples reporting cessation of sex and intimate physical contact post-cancer, resulting in considerable distress. Despite this, sexuality is rarely addressed by health professionals, and remains largely invisible within policy and practice guidelines designed to improve the quality of life of people with cancer and their partners. This project investigates the experience and construction of sexuality and intimacy post-cancer for people with cancer and their partners, across a broad range of cancer types and stages and compare these perspectives to those of health professionals. The aim of this research is to develop supportive interventions to improve communication and support around sexuality and intimacy in the care of patients with cancer.

Ethics Perspective Wheel in Bioethics

University of Sydney eLearning Project

Investigators: Macneill P, Kerridge I

Duration: 2008

Funding: $5,000

 

Difficult Decisions: a Critical Analysis of Consent to High-Risk Medical Procedures

NHMRC Project Grant 457439

Investigators: Kerridge IH, Stewart CL, Jordens CJF, Carter SM

Duration: 2007-09

Funding: $309,750 over 3 years

This study examines whether the current legal and ethical construct of consent adequately addresses the complexities surrounding high-risk medical procedures using the example of allogeneic stem cell transplant  (HSCT) in haematological malignancies. In-depth interviews were conducted with patients undergoing HSCT, their significant others, transplant physicians and other relevant members of the transplant team. Analysis of the interviews suggest that (i) prognostic uncertainty is a major determinant of decision-making in high risk medical interventions (ii) consultations between patients and physicians tend to centre almost exclusively on medical matters to the exclusion of the patient’s social context (iii) patients’ decisions to undergo HSCT are often based more on ‘intuitive factors’ than on consideration of risk-benefit analysis (iv) there exists discrepancy of views both between and amongst the physicians and patients on the legal requirement for the use of a formal consent form, and its purpose and standing, (v) differing perceptions exist regarding requirements to ensure that consent is not only valid, but that the process of consent serves its primary purpose to protect patients.

How do Lay People Understand the Risk of Developing Cancer? A Qualitative Study Using Grounded Theory Procedure

NHMRC Project Grant 457387

Investigators: Carter SM, Hooker CL, Thomas SL

Duration: 2007-09

Funding: $271,125 over 3 years

This study developed a detailed model of what cancer risk means to Australians. Our data in some ways mirrored the findings of quantitative psychometric research into risk perception. However, our analytic work provided important contextualisations for how this occurs  - for example, that control is lived, manifested and experienced through certain bodily regimes and practices of self-surveillance and self-accounting. It also revealed new analytic categories, of which perhaps the most significant is our development of a model of how people employ balancing strategies to contextualise risks and make decisions about their health and behaviour.

A Qualitative Study of the Experience of Multiple Myeloma

Cancer Council of NSW

Investigators: Jordens CFC, Kerridge I, Carter SM

Duration: 2007-09

Funding: $268,876 over 3 years

Due to a variety of new treatments, patients diagnosed with Multiple Myeloma (plasma cell cancer) can expect to live longer, but their experience of survival is overshadowed by the certainty that the disease will almost certainly prove fatal in the long run. This is a prospective, qualitative study of the experience of myeloma. It is based on 48 in-depth interviews with patients and a “lay carer” whom they nominate. Findings will be reported in Moira Stephen’s PhD thesis and in a series of forthcoming papers.

Towards a Best Practice of Emerging Technologies: PGD and HLA Typing for Paediatric Transplantation

NSW Cancer Council Research Project Grant RG 07-16

Investigators: Ankeny R, Shaw P, Jordens C, O'Brien T, Carter S, Kerridge I

Duration: 2007-09

Funding: $258,956 over 3 years

Pre-implantation genetic diagnosis (PGD) involves using in vitro fertilisation (IVF) to create human embryos, and then testing them genetically in order to select one or more for implantation. Combined with HLA typing, PGD has enabled couples in Australia and overseas to have a child who can act as a donor (usually of umbilical cord blood or bone marrow) for an ill sibling who needs a transplant. These children are often called “saviour siblings”. Currently there is no clinical consensus about when to suggest this course of action, who should provide information or referrals, and what issues to discuss with parents. This is a qualitative study based on semi-structured interviews with parents and medical professionals. It aims to describe what is currently taking place in practice, and what factors are weighed in decision-making. It also aims to ascertain information needs and attitudes of professionals and parents concerning the creation of “saviour siblings”.

Using melphalan blood concentrations to reduce toxicity and improve transplant outcome in adult myeloma patients

NHMRC Project Grant 39672

Investigators: Nath C, Shaw P, Trotman J., AI: Kerridge I

Duration: 2007-09

Funding: $456,500 over 3 years

 

[[b||Difficult Decisions: a Critical Analysis of Consent to High-Risk Medical Treatments; Examination of Legal and Ethical Limitations

NHMRC Project Grant 457439

Investigators: Kerridge I, Stewart C, Jordens C, Carter SM

Duration: 2007-09

Funding: $306,750 over 3 years

 

Certain death in uncertain time: a qualitative study of the experience of advanced ovarian cancer

NHMRC Project Grant 402601

Investigators: Harnett P, Kerridge I, Mason C, Jordens C, Hobbs K

Duration: 2007-09

Funding: $213,000 over 3 years

 

Deconstructing DTCA: Toward a Differentiated Policy Response to Direct-to-Consumer Advertising in Australia

NHMRC Project Grant 457497

Investigators: Kerridge I, Komesaroff P, Jordens C, Stewart C, Ankeny R, Carter SM

Duration: 2007-08

Funding: $185,563 over 2 years

Direct-to-consumer advertising (DTCA) is legal in the US and in New Zealand, but it is prohibited in Australia. Despite this, it is clear that a range of DTCA occurs in Australia and that the pharmaceutical industry continues to exert influence on consumers by various means that blur the boundaries between drug promotion, information, and education. It appears that the current legal situation around DTCA is insufficient to account for the complexity and dynamism of commercial influence; the range of stakeholder attitudes and values regarding DTCA; the transcendence of national boundaries by information technology; linguistic confusion regarding categories of meaning, and changes in the relationships between health care providers, consumers and the pharmaceutical industry. It is anticipated that the results of this study will enable the development of a range of health policies and strategies for dealing with different types and aspects of DTCA and may facilitate the development of a range of resources to assist consumers and health professionals to respond better to commercial sources of influence. 

Living With an Artificial Heart: Experiences of Patients and Carers

Deakin University Central Research Grant Scheme

Investigators: Currey J, Botti M, Thomas S, Kerridge I, Komesaroff P

Duration: 2007

Funding: $20,000 over 1 year

 

Quality of Survival Following Haematopoietic Stem Cell Transplant

Thyne Reid Charitable Trust

Investigators: Kerridge I, Jordens C, McGrath C, Little JM

Duration: 2005-06

Funding: $200,000 over 2 years

 

Interdisciplinary clinical and health ethics research and training to improve outcomes in immunosuppressed haematology patients.

NHMRC Centre of Clinical Research Excellence Grant  264625

Investigators: Sorrell T, Bradstock K, Kerridge I, Gilbert G, Gottlieb D, MacIntyre C, Dwyer D, Ankeny R

Duration: 2005-09

Funding: $2m for 5 years

 

An empirical study into the ethical issues affecting tumour (research) banks in New South Wales

University of Sydney Cancer Research Fund

Investigators: Bokey EL, Kerridge IH, Little JM, Lipworth WL

Duration: 2005-06

Funding: $70,630 over 2 years

This project explored the ethics of obtaining consent for biobanking research. It involved interviews with all key stakeholders. The key finding was that people place enormous trust in academic institutions and their ethics committees, and are, therefore, willing to give open-ended consent to research.

An empirical study into direct-to-consumer advertising (DTCA) of prescription pharmaceuticals in Australia

University of Sydney Bridging Support Grant

Investigators: Kerridge I, McNeill P, Day R, Jordens C, Stewart C

Duration: 2005

Funding: $70,000 over 1 year

 

Quality of survival following bone marrow transplantation

Thyne Reid Charitable Trust

Investigators: Kerridge I, Little M, Sayers E-J

Duration: 2003-04

Funding: $75,000 over 2 years