Growing Up with Cancer is a 3 year 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.

This project investigates the social and bioethical problems posed by oocyte donation for stem cell research. If it is to be successful, Australian Somatic Cell Nuclear Transfer (SCNT) research will require a large number of fertile human oocytes (‘eggs’). However, oocyte 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 a history of 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 oocyte 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. Ultimately, this research will produce an evidence base that will be essential in guiding and regulating the ethical development of the Australian and international stem cell effort, and to facilitate international scientific collaboration.

Obesity and overweight are public health priorities. Population-level programs, campaigns and regulations are required to prevent and reduce obesity. How should these interventions proceed? What is effective? What is ethical? How can we avoid doing harm? At present, we do not know. By studying current interventions in detail, and working with experts and practitioners in health promotion and ethics, this project will develop a new framework to guide overweight and obesity intervention in future.

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, the first of its type in Australia, 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 will consist of four approaches: 1) in-depth analysis of case studies of journalism; 2) interviews with employees of industry and with journalists; 3) focus group discussions with lay and health professional consumers and 4) on-line discussion and debate. Ultimately, the project aims to inform strategies to improve industry and journalistic policy and practices.

Allogeneic haematopoietic stem cell transplantation (HSCT), or bone marrow transplantation (BMT) is curative therapy for many malignant and non-malignant conditions including leukaemia, lymphoma, bone marrow failure syndromes, haemoglobinopathies, immunodeficiencies and inborn errors of metabolisms. 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. The success of UCB transplantation in children and in adults has been made possible by the establishment of umbilical cord blood banks. 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. Although these concerns have been widely debated, many have not been resolved. Further, to this point there has been no empirical examination of the UCB donation and banking system in Australia. This research will provide the first comprehensive description of Australian practices for obtaining consent for UCB donation and banking, as well as provide a thorough legal analysis of the Australian UCB donation and banking system. The results of this research 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.

This project builds on a previous NHMRC funded RCT (402466 2005-2008) 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. This RCT demonstrated that such treatments could be implemented successfully with positive outcomes (fewer fillings). This new NHMRC-funded project will explore how the implementation was managed, how it affected the practices personnel and patients, and how it was sustained. This project offers 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.

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 use data derived from different settings within an area health service to examine how health professionals make decisions of moral import and what resources they use to assist/guide their decision-making. This, in turn, 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. This 2 year project will use qualitative and quantitative methods to determine: the kinds of ethical and 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.

We propose to develop and investigate a different approach to VBM. We have begun to identify the foundational values that experienced clinicians bring to the practice of medicine by way of their interactions with patients and families, and to capture these values in a series of questions (see below for the preliminary list). We seek to refine these questions, in collaboration with the Office of Medical Education of the Faculty of Medicine, 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. The founding questions will be repeatedly asked during each segment of the course, and the resulting discussion led by experienced moderators.