text: Sydney eScholarship Community: http://hdl.handle.net/2123/2740 2015-04-01T14:41:14Z Genome editing poses ethical problems that we cannot ignore http://hdl.handle.net/2123/13063 Title: Genome editing poses ethical problems that we cannot ignore Authors: Wrigley, A; Newson, A.J. Abstract: The ability to precisely and accurately change almost any part of any genome, even in complex species such as humans, may soon become a reality through genome editing. But with great power comes great responsibility – and few subjects elicit such heated debates about moral rights and wrongs. Although genetic engineering techniques have been around for some time, genome editing can achieve this with lower error rates, more simply and cheaply than ever – although the technology is certainly not yet perfect. Genome editing offers a greater degree of control and precision in how specific DNA sequences are changed. It could be used in basic science, for human health, or improvements to crops. There are a variety of techniques but clustered regularly inter-spaced short palindromic repeats, or CRISPR, is perhaps the foremost. CRISPR has prompted recent calls for a genome editing moratorium from a group of concerned US academics. Because it is the easiest technique to set up and so could be quickly and widely adopted, the fear is that it may be put into use far too soon – outstripping our understanding of its safety implications and preventing any opportunity to think about how such powerful tools should be controlled. Ethical concerns over genetic modification are not new, particularly when it comes to humans. While we don't think genome editing gives rise to any completely new ethical concerns, there is more to gene editing than just genetic modification... 2015-03-31T00:00:00Z Which public and why deliberate? – A scoping review of public deliberation in public health and health policy research. http://hdl.handle.net/2123/13056 Title: Which public and why deliberate? – A scoping review of public deliberation in public health and health policy research. Authors: Degeling, C; Carter, SM; Rychetnik, L Abstract: Deliberative methods are of increasing interest to public health researchers and policymakers. We systematically searched the peer-reviewed literature to identify public health and health policy research involving deliberative methods and report how deliberative methods have been used. We applied a taxonomy developed with reference to health policy and science and technology studies literatures to distinguish how deliberative methods engage different publics: citizens (ordinary people who are unfamiliar with the issues), consumers (those with relevant personal experience e.g. of illness) and advocates (those with technical expertise or partisan interests). We searched four databases for empirical studies in English published 1996–2013. This identified 78 articles reporting on 62 distinct events from the UK, USA, Canada, Australasia, Europe, Israel, Asia and Africa. Ten different types of deliberative techniques were used to represent and capture the interests and preferences of different types of public. Citizens were typically directed to consider community interests and were treated as a resource to increase democratic legitimacy. Citizens were preferred in methodological studies (those focused on understanding the techniques). Consumers were directed to focus on personal preferences; thus convened not as a source of policy decisions, but of knowledge about what those affected by the issue would accept. Advocates—who are most commonly used as expert witnesses in juries—were sometimes engaged to deliberate with consumers or citizens. This almost always occurred in projects directly linked to policy processes. This suggests health policymakers may value deliberative methods as a way of understanding disagreement between perspectives. Overall however, the 'type' of public sought was often not explicit, and their role not specified. This review provides new insight into the heterogeneity and rising popularity of deliberative methods, and indicates a need for greater clarity regarding both the constitution of publics and the relative usefulness of different deliberative techniques. Keywords Deliberative methods; Public health; Health policy; Public participation; Policy making 2015-03-01T00:00:00Z Ethanol consumption impairs vestibulo-ocular reflex function measured by the video head impulse test and dynamic visual acuity http://hdl.handle.net/2123/12989 Title: Ethanol consumption impairs vestibulo-ocular reflex function measured by the video head impulse test and dynamic visual acuity Authors: Roth, Thomas N; Weber, Konrad P; Wettstein, Vincent G; Marks, Guy B; Rosengren, Sally M; Hegemann, Stefan CA Abstract: Ethanol affects many parts of the nervous system, from the periphery to higher cognitive functions. Due to the established effects of ethanol on vestibular and oculomotor function, we wished to examine its effect on two new tests of the vestibulo-ocular reflex (VOR): the video head impulse test (vHIT) and dynamic visual acuity (DVA). We tested eight healthy subjects with no history of vestibular disease after consumption of standardized drinks of 40% ethanol. We used a repeated measures design to track vestibular function over multiple rounds of ethanol consumption up to a maximum breath alcohol concentration (BrAC) of 1.38‰. All tests were normal at baseline. VOR gain measured by vHIT decreased 25% by the highest BrAC level tested in each subject. Catch-up saccades were negligible at baseline and increased in number and size with increasing ethanol consumption (from 0.13° to 1.43° cumulative amplitude per trial). DVA scores increased by 86% indicating a deterioration of acuity, while static visual acuity (SVA) remained unchanged. Ethanol consumption systematically impaired the VOR evoked by high-acceleration head impulses and led to a functional loss of visual acuity during head movement. 2014-01-01T00:00:00Z Women in contact with the Sydney gay and lesbian community: Report of the Sydney Women and Sexual Health (SWASH) Survey 2006, 2008, 2010, 2012, 2014 http://hdl.handle.net/2123/12949 Title: Women in contact with the Sydney gay and lesbian community: Report of the Sydney Women and Sexual Health (SWASH) Survey 2006, 2008, 2010, 2012, 2014 Authors: Mooney-Somers, Julie; Deacon, Rachel; Richters, Juliet; Parkhill, Nicolas Abstract: The Sydney Women and Sexual Health (SWASH) survey is run by a collaboration of ACON and researchers at the University of Sydney (prior to 2009, researchers were based at the University of New South Wales). It was first carried out in 1996, initiated by workers from two ACON projects, Women Partners of Gay and Bisexual Men and the Gay and Lesbian Injecting Drug Use Project, who were faced with a lack of empirical evidence on which to base their intervention work. The survey is regularly revised to reflect the needs of the community and knowledge deficits identified through research literature. Over its lifetime, SWASH has become a comprehensive survey of sexual health and wellbeing, violence, mental health and levels of psychological distress, and a number of other important health issues relevant to lesbian, bisexual and queer (LBQ) women, such as tobacco use, illicit drug use, alcohol consumption, and cancer screening behaviours. Where possible, questions have been used from established national surveys such as the Australian Health Survey, National Drug Strategy Household Survey, Australian Study of Health and Relationships, and Australian Longitudinal Survey of Women's Health. While research on LBQ women's health and wellbeing has increased since the birth of the survey, epidemiological data on sexual health, mental health, experiences of abuse and violence and behaviours such as screening, illicit drug use, alcohol and smoking that can leave women vulnerable to adverse health outcomes, is still inconsistent. Moreover, as long as the inclusion of sexuality questions in large epidemiological surveys remains patchy or data is reported only by sexuality and not by sexuality and gender, SWASH provides a unique and important source of health-related information about Australian LBQ women. This report presents results from surveys conducted at the Sydney Gay and Lesbian Mardi Gras Fair Day and other community events and venues during the Sydney Gay and Lesbian Mardi Gras seasons in 2006, 2008, 2010, 2012 and 2014. 2015-03-01T00:00:00Z The Ethics around Drug Labels and Generic Medicines. http://hdl.handle.net/2123/12938 Title: The Ethics around Drug Labels and Generic Medicines. Authors: Day, R; Lipworth, W; Ghinea, N Abstract: The labels of off-patent medicines can be obsolete and even misleading when compared to the contemporary, evidence-based use of the medicine. Apart from serious adverse drug reactions that can lead to rapid changes to the label, regulatory agencies can only review and approve proposed changes to the label submitted by the sponsor of the medicine. There are many reasons why a sponsor may not wish or have incentive to submit proposed changes, particularly once a medicine is off-patent. The problem of misleading and potentially dangerous medicines labels post-patent expiry needs to be addressed. Consideration is needed of the roles of the label at patent expiry, how well that role is fulfilled and the possible alternatives. Our preference is for a 'partnership' approach to support production and maintenance of up to date, and relevant information for generic medicines that is pragmatically situated within the context of other sources of high quality information and advice. Reform is clearly needed but progress will be dependent on convincing stake-holders of that need and will require much lateral and innovative thought from all stakeholders best facilitated by an 'honest broker' such as the DIA. 2015-01-01T00:00:00Z "Improving the legitimacy of medicines funding decisions: A critical literature review" http://hdl.handle.net/2123/12936 Title: "Improving the legitimacy of medicines funding decisions: A critical literature review" Authors: Pace, J; Pearson, S; Lipworth, W Abstract: Many healthcare systems globally provide publicly subsidised access to prescribed medicines. Decisions about which medicines to fund affect a range of stakeholders and it is not reasonable to expect that medicines funding decisions are supported by all stakeholder groups all the time. A more realistic aim may be for decisions to be understood and accepted as legitimate by stakeholders, however several shortcomings of existing processes make it difficult to achieve this aim. To date, the main strategy to address these shortcomings has been to increase stakeholder involvement in decision-making, either by eliciting stakeholder values or increasing stakeholder participation in decision-making. Despite these efforts, there is growing evidence that decision-makers are falling short when it comes to the perceived legitimacy of their resource allocation processes and decisions. As such, there is a pressing need for decision-makers to think seriously and creatively about ways to increase the legitimacy of their processes and to make them more acceptable to a wider range of stakeholders. In this article we summarise and critique existing literature on the legitimacy of public resource allocation processes, and make some practical suggestions for those who are concerned about this issue. Keywords: pharmaceutical funding decisions, legitimacy, stakeholder engagement, resource allocation, priority setting. 2015-01-01T00:00:00Z Doctors' approaches to PSA testing and overdiagnosis in primary healthcare: a qualitative study. http://hdl.handle.net/2123/12932 Title: Doctors' approaches to PSA testing and overdiagnosis in primary healthcare: a qualitative study. Authors: Pickles, K; Carter, SM; Rychetnik, L Abstract: Objectives: (1) To explain general practitioners' (GPs') approaches to prostate-specific antigen (PSA) testing and overdiagnosis; (2) to explain how GPs reason about their PSA testing routines and (3) to explain how these routines influence GPs' personal experience as clinicians. Setting: Primary care practices in Australia including men's health clinics and rural practices with variable access to urology services. Partic ipants: 32 urban and rural GPs within Australia. We included GPs of varying ages, gender (11 female), clinical experience and patient populations. All GPs interested in participating in the study were included. Primary and secondary outcome measure(s): Data were analysed using grounded theory methods to determine how and why GPs provide (or do not provide) PSA testing to their asymptomatic male patients. Results: We observed patterned variation in GP practice, and identified four heuristics to describe GP preference for, and approaches to, PSA testing and overdiagnosis: (1) GPs who prioritised avoiding underdiagnosis, (2) GPs who weighed underdiagnosis and overdiagnosis case by case, (3) GPs who prioritised avoiding overdiagnosis and (4) GPs who did not engage with overdiagnosis at all. The heuristics guided GPs' Routine Practice (usual testing, communication and responses to patient request). The heuristics also reflected GPs' different Practice Rationales (drawing on experience, medicolegal obligations, guidelines and evidence) and produced different Practice Outcomes (GPs' experiences of the consequences of their PSA testing decisions). Some of these heuristics were more responsive to patient preferences than others. Conclus ions: Variation in GPs' PSA testing practices is strongly related to their approach to overdiagnosis and underdiagnosis of prostate cancer. Men receive very different care depending on their GP's reasoning and practice preferences. Future policy to address overdiagnosis will be more likely to succeed if it responds to these patterned variations 2015-01-01T00:00:00Z Whose genome is it anyway? Ethics and whole genome sequencing before birth http://hdl.handle.net/2123/12923 Title: Whose genome is it anyway? Ethics and whole genome sequencing before birth Authors: Newson, A.J. Abstract: Geneticist Razib Khan's decision to obtain the whole genome sequence of his partner's fetus in utero shows us that genomics is no longer a fantasy. While it would be a mistake to use this one example to condemn the entire practice of whole genome sequencing (WGS) prior to birth, I will suggest here why we should look before we leap regarding prenatal WGS. If you lean towards the permissive with respect to genomics, this sequencing event may not be a big deal. Genomic sequencing technology is now fast and cheap. Long-held paradigms such as non-directiveness and respecting children's future autonomy may no longer apply when sequence information is becoming almost mundane and is striding into new healthcare domains. Presumptions of bodily integrity and reproductive autonomy in pregnancy may further diminish concerns – after all, we have very few justifiable thresholds for interfering in decision-making during pregnancy and the harm to the future child that may occur here would be unlikely to reach them. I think a bit differently to this and advocate a (future) child-centred approach; one which rejects technological imperatives to obtain whole sequences before birth just because we can. WGS will soon be cheaper than testing for one or a few genes and this is certainly a welcome development. But while high throughput methods might be chosen, they should not necessarily dictate the information that is provided. Genomics will bring a significant change in the volume of information received and we won't know for some time what it all means. Genomics also won't ever be able to tell us everything about our health. While Khan may have been able to analyse his son's own genome, this skill will not be within everyone's reach. And while genome sequencing is cheap, interpretation and data storage are not. Description: Newsletter article 2014-12-01T00:00:00Z Protocol for the process evaluation of a complex intervention designed to increase the use of research in health policy and program organisations (the SPIRIT study) http://hdl.handle.net/2123/12921 Title: Protocol for the process evaluation of a complex intervention designed to increase the use of research in health policy and program organisations (the SPIRIT study) Authors: Haynes, A; Brennan, S; Carter, SM; O'Connor, D; Schneider, CH; Turner, T; Gallego, G Abstract: Background: Process evaluation is vital for understanding how interventions function in different settings, including if and why they have different effects or do not work at all. This is particularly important in trials of complex interventions in 'real world' organisational settings where causality is difficult to determine. Complexity presents challenges for process evaluation, and process evaluations that tackle complexity are rarely reported. This paper presents the detailed protocol for a process evaluation embedded in a randomised trial of a complex intervention known as SPIRIT (Supporting Policy In health with Research: an Intervention Trial). SPIRIT aims to build capacity for using research in health policy and program agencies. Methods: We describe the flexible and pragmatic methods used for capturing, managing and analysing data across three domains: (a) the intervention as it was implemented; (b) how people participated in and responded to the intervention; and (c) the contextual characteristics that mediated this relationship and may influence outcomes. Qualitative and quantitative data collection methods include purposively sampled semi-structured interviews at two time points, direct observation and coding of intervention activities, and participant feedback forms. We provide examples of the data collection and data management tools developed. Discussion: This protocol provides a worked example of how to embed process evaluation in the design and evaluation of a complex intervention trial. It tackles complexity in the intervention and its implementation settings. To our knowledge, it is the only detailed example of the methods for a process evaluation of an intervention conducted as part of a randomised trial in policy organisations. We identify strengths and weaknesses, and discuss how the methods are functioning during early implementation. Using 'insider' consultation to develop methods is enabling us to optimise data collection while minimising discomfort and burden for participants. Embedding the process evaluation within the trial design is facilitating access to data, but may impair participants' willingness to talk openly in interviews. While it is challenging to evaluate the process of conducting a randomised trial of a complex intervention, our experience so far suggests that it is feasible and can add considerably to the knowledge generated. Keywords: Process evaluation, Complex intervention, Implementation, Knowledge exchange, Health policy, Organisational change, Capacity building, Qualitative methods, Developmental evaluation, Framework analysis 2014-01-01T00:00:00Z Medicine needs to swallow a bitter pill for a healthier future http://hdl.handle.net/2123/12920 Title: Medicine needs to swallow a bitter pill for a healthier future Authors: Hooker, C; Ivory, K Abstract: Many doctors will recall as a student or trainee hanging nervously off the end of a Deaver – a large retractor used in pre-keyhole gall bladder surgery – while simultaneously trying to answer the surgeon's barked questions about the anatomy in the cavity. The problem is you can't actually see into the cavity without loosening your grip. A looser grip means less vision for the surgeon and usually a torrent of abuse for the trainee. Such moments of "teaching by humiliation" during medical training underscore the nature of medical culture: a totem pole that places surgeons very much at the top. Indeed, doctors have long enjoyed both enormous autonomy and deference to their apparent god-like power to stave off death. Within this mythology, medicine has built a hierarchical and autocratic workplace culture in which incivility, and even frank bullying, towards subordinates is commonplace. Medical students gradually acculturate to this during their training, often at the cost of their empathy and compassion. A recent meta-analysis of 51 studies on harassment and discrimination in medical training showed 59.4% of medical trainees had experienced at least one form of these. "Teaching by humiliation" – regarded by some as a kind of necessary hardening experience – was experienced by 74% of students and witnessed by 84%. Many still felt the sting decades later. Such power-oriented, stratified workplaces are good for no one. And, in medicine, many of the worst consequences fall on patients. Description: The Conversation article 2015-03-13T00:00:00Z Don't be surprised by Abbott's comments about 'lifestyle choices' http://hdl.handle.net/2123/12919 Title: Don't be surprised by Abbott's comments about 'lifestyle choices' Authors: Mayes, C; Kaldor, J Abstract: Prime Minister Tony Abbott's claim this week that people living in remote communities were making a "lifestyle choice" that taxpayers shouldn't be obliged to fund was not just the result of an unguarded moment. Rather, the phrase reveals an underlying view that social circumstances are the responsibility of individuals, rather than societies. Commentators as well as Abbott's top advisers on Indigenous affairs were quick to criticise the characterisation. Others suggested it was just another prime ministerial gaffe that shouldn't distract us from the real issues. Abbott is infamous for his gaffes and "dad jokes", but this was not one of those moments. A day after he made the remark, the prime minister defended his use of the phrase on the Alan Jones Show. Sounds familiar For those of us who work in, or observe, public health, using a phrase like "lifestyle choice" to shift responsibility away from the government is familiar territory. For decades, the risk factors of chronic diseases such as heart disease or type-2 diabetes were described as the "diseases of lifestyle", rooted in individual choice. But chronic diseases actually have a plurality of causes that include genetics, environment, and social and economic circumstances as well as behaviour. To reduce them to individual choices misrepresents what we know about these complex diseases and places an unjustified burden of responsibility on individuals. Description: the Conversation article 2015-03-13T00:00:00Z The challenge of overdiagnosis begins with its definition http://hdl.handle.net/2123/12918 Title: The challenge of overdiagnosis begins with its definition Authors: Carter, SM; Rogers, W; Degeling, C; Doust, J; Barratt, A Abstract: Overdiagnosis means different things to different people. S M Carter and colleagues argue that we should use a broad term such as too much medicine for advocacy and develop precise, case by case definitions of overdiagnosis for research and clinical purposes The implicit social contract underpinning healthcare is that it will reduce illness and preventable death and improve quality of life. But sometimes these promises are not delivered. Sometimes health services take people who don't need intervention, subject them to tests, label them as sick or at risk, provide unnecessary treatments, tell them to live differently, or insist on monitoring them regularly.1 These interventions don't improve things for people; they produce complications or illness, reduce quality of life, or even cause premature death. Active health intervention is not always a good thing: it can be "too much medicine," or produce what is often called overdiagnosis. Although the concept of overdiagnosis has been described in the literature for nearly 50 years in relation to cancer screening,2 3 it was Welch and colleagues' 2011 book, Overdiagnosed: Making People Sick in the Pursuit of Health, that popularised the term.4 Overdiagnosis is now an acknowledged problem for patients, clinicians, researchers, and policymakers; it is discussed in journals5 6 7 and at specialist conferences8 and addressed through policy and practice initiatives.9 10 11 There is, however, no formal, agreed definition of overdiagnosis. Rather, the word has become a banner under which disparate people with similar general concerns can unite. This vagueness and breadth allows the appearance of unity but does not serve the more exacting demands of research and healthcare. Here we examine the meanings of overdiagnosis more closely and discuss related challenges for healthcare professionals, patients, and researchers. If overdiagnosis is to be understood and mitigated, the broad concept should be subdivided into different problems and its ethical dimensions better acknowledged. 2015-01-01T00:00:00Z Report of the Sydney Women and Sexual Health (SWASH) Survey 2006, 2008, 2010, 2012, 2014 http://hdl.handle.net/2123/12917 Title: Report of the Sydney Women and Sexual Health (SWASH) Survey 2006, 2008, 2010, 2012, 2014 Authors: Mooney-Somers, Julie; Deacon, RM; Richters, J; Parkhill, N Abstract: The Sydney Women and Sexual Health (SWASH) survey is a comprehensive survey of important health issues relevant to lesbian, bisexual and queer (LBQ) women including sexual health and wellbeing, violence, mental health, tobacco use, illicit drug use, alcohol consumption, and cancer screening behaviours. This report presents results from surveys conducted at the Sydney Gay and Lesbian Mardi Gras Fair Day and other community events and venues during the Sydney Gay and Lesbian Mardi Gras seasons in 2006, 2008, 2010, 2012, and 2014. It highlights several health issues of particular concern – many of which have persisted over time – where mainstream preventive health interventions that are inclusive of this group or targeted to LBQ, are needed. Description: Report 2015-01-01T00:00:00Z A Better Grounding for Person-Centered Medicine? http://hdl.handle.net/2123/12916 Title: A Better Grounding for Person-Centered Medicine? Authors: Little, M Abstract: There is nothing like medicine to attract reformers. Their arguments include claims that orthodox medicine produces iatrogenic harm, it is too expensive, it is arrogantly exclusive of other systems of practice, its practitioners lack empathy and communication skills, and its practitioners are wilfully ignorant of their patients' beliefs and needs. Entwistle and Watt (2013) have done a good job of gathering together the suggested modes of reform from the last 50 years or so. They might well have gone back to Peabody (1927) and Osler (1948), and beyond to Colles (1881) and even to the Salerno school of the 11th century, because there is a long history of people and movements that have sought to make medicine more humanistic, more considerate, better behaved. There is an equally long history of criticism of the medical profession for its materialism, cynicism, and capacity for self-serving. All such criticisms deserve careful attention, and the profession's modern response has been to introduce processes that can be seen to deal with specific shortcomings. Yet the reform movements still proliferate—humane medicine, patient-centered care, narrative-based medicine, empathic care, mindful practice, values-based medicine, and most recently—and perhaps significantly—person-centered medicine (Ekman et al. 2012; Henry, Zaner, and Dittus 2007; Miles and Mezzich 2011a; Miles and Mezzich 2011b). The latter has become an umbrella term for Entwistle and Watt to cover all the qualitative reform movements that remain alive, if not flourishing. In doing this, they do us a service by reminding us of the common ground that these movements share. It should also remind us—although the article avoids dwelling on the matter— that all the current schemes are offered as alternatives to the immense influence of evidence-based medicine (EBM) 2013-01-01T00:00:00Z Deriving and critiquing an empirically-based framework for pharmaceutical ethics. http://hdl.handle.net/2123/12913 Title: Deriving and critiquing an empirically-based framework for pharmaceutical ethics. Authors: Lipworth, W; Little, M Abstract: Background: The pharmaceutical industry has been responsible for major medical advances, but the industry has also been heavily criticized. Such criticisms, and associated regulatory responses, are no doubt often warranted, but do not provide a framework for those who wish to reason systematically about the moral dimensions of drug development. We set out to develop such a framework using Beauchamp and Childress's "four principles" as organizing categories. Methods: We conducted a qualitative interview study of people working in the "medical affairs" departments of pharmaceutical companies to determine: (1) whether our data could meaningfully be organized under the headings of "autonomy," "beneficence," "nonmaleficence," and "justice"; (2) how principles might be expressed in this particular commercial setting; and (3) if these principles are expressed, whether and how competing principles are balanced. We then critiqued these findings using existing normative theory. Results: Our interviews demonstrated that three of Beauchamp and Childress' four principles were salient to our participants: beneficence, non-maleficence, and justice. Within each of these principles, participants had two broad ethical orientations: an altruistic public focus ("other-ness") and a commitment to their companies ("firm-ness"). Our participants also demonstrated efforts to balance these principles and highlighted the importance of phronesis (or practical wisdom) in balancing and enacting principles. Notably, however, our participants did not spontaneously emphasize the importance of autonomy. Conclusions: It is possible to use qualitative empirical research, together with normative analysis, to derive a framework for pharmaceutical ethics. We suggest that our framework would be useful for those who wish to reason ethically within, or in collaboration with, the pharmaceutical industry. Keywords: Empirical ethics, principle-based ethics, pharmaceutical industry, pharmaceutical ethics, qualitative research 2013-01-01T00:00:00Z Return of the Memento Mori: imaging death in public health. http://hdl.handle.net/2123/12912 Title: Return of the Memento Mori: imaging death in public health. Authors: Noonan, E; Little, M; Kerridge, I Abstract: Death has always held a morbid fascination for humans. Indeed, awareness of one's own mortality may well be one of the defining features of the 'human condition' – symbols of death appearing in most civilizations since artefacts have been made. The Latin phrase memento mori, meaning literally 'remember to die', encapsulates a rich and varied artistic tradition, dating back to the Middle Ages, of figuring death by symbolizing its literal processes and remainders. From the decomposed effigies of 15th-century 'cadaver tombs', to the humorous medieval iconography of the skeletal danse macabre, the works of this genre draw on the destructive physical changes that are a part of our understanding of death. Prolific within its morbid imagery are the use of skull, skeleton and verminous or rotting flesh as 'trope' or symbol of the processes that eventually take away the person who lived, and who was once like us. At the height of its popularity between the 16th and 18th centuries, Church walls, tombs, jewellery, paintings, and so on frequently depicted death and decay. The entreaty to 'remember' death in memento mori was more than simply a call for 'therapeutic contemplation'1 or the banal acceptance of the imminence of death; it was a call to piety, to conformity. Damnation would be added to death if the individual transgressed the rules of Catholic doctrine, such that scholars often trace a continuity between the motives of memento mori, and the biblical injunction: 'Whatsoever thou takest in hand, remember the end, and thou shalt never do amiss' (Ecclesiasticus 7:36).2 Even within the iconophobic Protestantism of the post-Reformation era, the memento mori trope persisted as a privileged mode of pious warning. In the visually secular effigy monuments of the Elizabethan gentry, inscriptions urging the reader to '(r)emember the last things and…not sin again' signified that death would come to everyone – but only spiritual public health would reduce the risk of eternal punishment and separation from God.3 The memento mori trope survives into the present day, albeit in differing locations. Loosely discernible in the 'corpse chic' of contemporary haute couture, and entrenched within the aesthetics of punk and gothic subcultures, the skull and skeleton loom large as Western symbols of cultural rebellion.4 Similarly, the fully enfleshed 'corpse' continues to haunt the zone of 2 | P a g e contemporary representation – saturating the realm of Hollywood film and 'hard news' reportage alike, and asserting its dominance in forensics-inspired television programmes such as CSI. Representing death, it would seem, has never been more popular. Indeed, depictions of death have emerged as 'mainstream advertising strategy'4 – their gore and horror satisfying a perverse voyeurism that many would attribute to the alienating effects of mass media saturation. While the 'pornography' of suffering5 in contemporary culture appears to have little in common with classical memento mori, if one looks closely, certain elements particular to this once-spiritual genre of death depiction can be unearthed, most notably in the secular arena of public health. 2013-01-01T00:00:00Z Public Health Ethics and a Status for Pets as Person-Things: Revisiting the Place of Animals in Urbanized Societies. http://hdl.handle.net/2123/12911 Title: Public Health Ethics and a Status for Pets as Person-Things: Revisiting the Place of Animals in Urbanized Societies. Authors: Rock, M; Degeling, C Abstract: Within the field of medical ethics, discussions related to public health have mainly concentrated on issues that are closely tied to research and practice involving technologies and professional services, including vaccination, screening, and insurance coverage. Broader determinants of population health have received less attention, although this situation is rapidly changing. Against this backdrop, our specific contribution to the literature on ethics and law vis-à-vis promoting population health is to open up the ubiquitous presence of pets within cities and towns for further discussion. An expanding body of research suggests that pet animals are deeply relevant to people's health (negatively and positively). Pet bylaws adopted by town and city councils have largely escaped notice, yet they are meaningful to consider in relation to everyday practices, social norms, and cultural values, and thus in relation to population health. Nevertheless, not least because they pivot on defining pets as private property belonging to individual people, pet bylaws raise emotionally charged ethical issues that have yet to be tackled in any of the health research on pet ownership. The literature in moral philosophy on animals is vast, and we do not claim to advance this field here. Rather, we pragmatically seek to reconcile philosophical objections to pet ownership with both animal welfare and public health. In doing so, we foreground theorizations of personhood and property from sociocultural anthropology. Keywords : Anthropology; Philosophy; Ethics; Public health; Urban health; Pets 2013-01-01T00:00:00Z Toward stronger theory in critical public health: Insights from debates surrounding posthumanism http://hdl.handle.net/2123/12910 Title: Toward stronger theory in critical public health: Insights from debates surrounding posthumanism Authors: Rock, M; Degeling, C; Blue, G Abstract: The "posthumanist turn" in critical theory comprises efforts to recognize and analyze the interdependence of human existence with non-human entities, including other animals, spaces, and technologies. Scholarship aligned to and debating posthumanism pertains to public health, but has yet to be clearly articulated for a public health audience. This commentary and an appended glossary illustrate the relevance of these ideas for enhancing critical theory in public health. Keywords: Social Sciences, Humanities, Technology, Animals, Public Health 2013-01-01T00:00:00Z Faith-based Perspectives on the use of Chimeric organisms for medical research. http://hdl.handle.net/2123/12909 Title: Faith-based Perspectives on the use of Chimeric organisms for medical research. Authors: Degeling, C; Irvine, R; Kerridge, I Abstract: Efforts to advance our understanding of neurodegenerative diseases involve the creation chimeric organisms from human neural stem cells and primate embryos – known as prenatal chimeras. The existence of potential mentally complex beings with human and non-human neural apparatus raises fundamental questions as to the ethical permissibility of chimeric research and the moral status of the creatures it creates. Even as bioethicists find fewer reasons to be troubled by most types of chimeric organisms, social attitudes towards the non-human world are often influenced by religious beliefs. In this paper scholars representing eight major religious traditions provide a brief commentary on a hypothetical case concerning the development and use of prenatal human-animal chimeric primates in medical research. These commentaries reflect the plurality and complexity within and between religious discourses of our relationships with other species. Views on the moral status and permissibility of research on neural human animal chimeras vary. The authors provide an introduction to those who seek a better understanding of how faith-based perspectives might enter into biomedical ethics and public discourse towards forms of biomedical research that involves chimeric organisms. Keywords: Chimeric organisms; Animal experimentation; Religion; Bioethics 2013-01-01T00:00:00Z What to think of canine obesity? Emerging challenges to our understanding of human-animal health relationships. http://hdl.handle.net/2123/12908 Title: What to think of canine obesity? Emerging challenges to our understanding of human-animal health relationships. Authors: Degeling, C; Kerridge, I; Rock, M Abstract: The coincident and increasing occurrence of weight-related health problems in humans and canines in Western societies poses a challenge to our understanding of human–animal health relationships. More specifically, the epistemological and normative impetus provided by current approaches to shared health risks and chronic diseases in cohabiting human and animal populations does not account for causal continuities in the way that people and their pets live together. An examination of differences in medical responses to these conditions in human and pet dogs points to the existence of a distinct conceptual and ethical sphere for companion animal veterinary medicine. The disengagement of veterinary medicine for companion animals from human medicine has implications for our understanding what is required for health and disease prevention at the level of populations. This disengagement of companion animal veterinarians from family and preventive medicine, in particular, constrains professional roles, planning processes and, thereby, the potential for better-integrated responses to shared burdens of chronic conditions that increasingly affect the health and welfare of people and companion animals. Keywords: Human–Animal Relationships, Medical Epistemology, Companion Animal Welfare, Veterinary Ethics, Public Health Ethics, One Health 2013-01-01T00:00:00Z Umbilical cord blood banking and the next generation of human tissue regulation: An agenda for research http://hdl.handle.net/2123/12907 Title: Umbilical cord blood banking and the next generation of human tissue regulation: An agenda for research Authors: Kerridge, I; Stewart, C Abstract: The transformation of umbilical cord blood from being a waste product to being a valuable source of stem cells has led to the emergence of significant legal, ethical and social issues. This editorial proposes an agenda for research into the regulation of umbilical cord blood banking which focuses on issues of characterisation, consent, the interplay of public and private services, and the importance of applying property concepts. It concludes by stressing the need for reform to be based on well-informed public debate. Description: Guest editorial 2012-01-01T00:00:00Z Comparison of human mammary epithelial cells immortalized by simian virus 40 T-Antigen or by the telomerase catalytic subunit http://hdl.handle.net/2123/12906 Title: Comparison of human mammary epithelial cells immortalized by simian virus 40 T-Antigen or by the telomerase catalytic subunit Authors: Toouli, CD; Huschtscha, LI; Neumann, AA; Noble, JR; Colgin, LM; Hukku, B; Reddel, RR Abstract: We directly compared two methods of immortalizing human mammary epithelial cells (HMECs). Cells were transfected with an expression plasmid either for hTERT, the catalytic subunit of telomerase, or for the simian virus 40 (SV40) early region genes. Under standard culture conditions, HMECs were not immortalized by hTERT unless they had spontaneously ceased expression of the p16(INK4a) tumor suppressor gene. Untransfected HMECs had low levels of telomerase expression, and immortalization by both methods was associated with an increase in telomerase activity and prevention of telomere shortening. SV40-induced immortalization was accompanied by aberrant differentiation, loss of DNA damage response, karyotypic instability and, in some cases, tumorigenicity. hTERT-immortalized cells had fewer karyotypic changes, but had intact DNA damage responses, and features of normal differentiation. Although SV40-immortalized cells are useful for studies of carcinogenesis, hTERT-immortalized cells retain more properties of normal cells. 2002-01-01T00:00:00Z Manifesto on Art, Design and Social Science - Method as Speculative Event. http://hdl.handle.net/2123/12860 Title: Manifesto on Art, Design and Social Science - Method as Speculative Event. Authors: Michael, M; Costello, B; Mooney-Somers, Julie; Kerridge, I Abstract: Proposes that techniques from art and design can be used within social science research as part of a speculative methodology. Provides a set of heuristic principles for speculative method, characterizing it as processual, performative, playful, promising and propositional. Keywords: speculative, method, art, design, social science, research 2014-01-01T00:00:00Z Stories worth telling: Moral experiences of suicidal behavior. http://hdl.handle.net/2123/12778 Title: Stories worth telling: Moral experiences of suicidal behavior. Authors: Fitzpatrick, S.J. Abstract: Moral constructions of suicide are deliberately avoided in contemporary suicidology, yet morality persists, little or imperfectly acknowledged, in its practices and in the policies, discourses, and instruments that it underpins. This study used narrative methodologies to examine the normative force of suicidology and its implications for persons who had engaged in an act of nonfatal suicidal behavior. I interviewed a convenience sample of twelve persons from two inner–urban community mental health centers who were receiving crisis and case management services after a recent act of nonfatal suicidal behavior. Interviews focused on events leading up to and after participants' suicidal behavior; the responses their suicidal behavior generated in others, including family, friends, and the health professionals caring for them; and cultural views of suicide more broadly. Analysis of these interviews revealed that, although participants' narratives were broadly consistent with a number of recognizable, canonical story formats common to our cultural repertoire of stories of suicide, they also revealed important tensions, divisions, confl icts, and challenges to contemporary suicidological discourse and practice. Despite evidence to suggest that biomedical understandings of suicide provided some therapeutic benefi t to participants, they did not address important social and moral dimensions of human life or explore their connection to suicidal behavior—aspects of the suicidal event that were critical to its causation and to its retelling and "resolution." The results of this study provide important insights into the moral features of suicidal behavior, the moral and ethical implications of suicide research, and the limitations of moral and ethical discourse in suicidology. Key Words. Ethics, Moral Experience, Narrative, Qualitative Research, Suicide, Suicidology 2014-01-01T00:00:00Z In reply: One moment doctor! Have you forgotten hand hygiene? http://hdl.handle.net/2123/12774 Title: In reply: One moment doctor! Have you forgotten hand hygiene? Authors: Gilbert, GL Abstract: Auditing the five moments of hand hygiene is potentially subjective, but auditor training is designed to ensure consistency between auditors within and between health care settings. Interpretative differences cannot explain consistent differences in compliance between professions. Moments sometimes, legitimately, coincide. The example given by Barnes is a double moment that would be audited as two correct moments if nothing were touched in between, as described in the Hand Hygiene Australia manual: "Typically, this occurs when moving directly from one patient to another without touching anything in between . . . a single hand hygiene action will cover two moments for HH [hand hygiene], as Moments 4 and 1 coincide". Nevertheless, it is common, when moving between patients — even those immediately adjacent to each other — for us to touch objects, unconsciously; for example, the bed curtain, door handle, patient record, stethoscope, mobile phone, our nose, etc. Any of these objects can be contaminated with potential pathogens; failure to perform hand hygiene immediately before touching the next patient (Moment 1, the least often performed) can transmit pathogens more readily than most people realise. Description: letter in reply 2014-01-01T00:00:00Z The telling moment: Narrative as a discursive act. http://hdl.handle.net/2123/12773 Title: The telling moment: Narrative as a discursive act. Authors: Fitzpatrick, S.J. Abstract: As a work of interdisciplinary dialogue, Mary Jean Walker (2012) successfully straddles the fields of neuro- and cognitive science and social psychology in addressing key questions on the role, value and truth claims of narrative as a mode of self-understanding. However, in the context of neuroethical debate her article raises a set of parallel conceptual and epistemological concerns which confuse and conflate what it is to tell stories. I suggest that Walker's perspective is philosophically limited in that she does not explicitly acknowledge narrative as a discursive activity. In this, Walker is not alone – the neuro- and cognitive sciences frequently make assumptions about what narrative is and what it is not. This is significant because a theory of narrative which is blind to narrative as a discursive activity risks diminishing important social contexts involved in the construction of human self-understanding and truth. One of the most striking features of the disciplinary border-crossings which have resulted in narrative gaining conceptual prominence in fields such as psychology and neuroscience is the degree to which the term narrative is left undefined, or the degree to which it is conflated with prediscursive structures of action, experience or underlying neurobiological or cognitive substrate capable of being read in the same way we read narrative texts (Bamberg, 2006). While Walker acknowledges that narrative is interpretive, selective, relational and contextual, she subordinates the very object of narration itself – social discourse – to the neuropsychological structures and processes which underlie it. 2012-01-01T00:00:00Z Religious perspectives on the use of psychopharmaceuticals as an enhancement technology http://hdl.handle.net/2123/12772 Title: Religious perspectives on the use of psychopharmaceuticals as an enhancement technology Authors: Fitzpatrick, S.J.; Jordens, C; Kerridge, I; Keown, D; Walter, JJ; Nelson, P; Abdalla, M; Lehmann, LS; Sarma, D Abstract: The use of psychopharmaceuticals as an enhancement technology has been the focus of attention in the bioethics literature. However, there has been little examination of the challenges that this practice creates for religious traditions that place importance on questions of being, authenticity and identity. We asked expert commentators from six major world religions to consider the issues raised by psychopharmaceuticals as an enhancement technology. These commentaries reveal that in assessing the appropriate place of medical therapies, religious traditions, like secular perspectives, rely upon ideas about health and disease and about normal human behavior. But unlike secular perspectives, faith traditions explicitly concern themselves with ways in which medicine should or should not be used to live a 'good life'. KEYWORDS: Enhancement; bioethics, psychopharmacology, religion 2014-01-01T00:00:00Z Looking beyond the qualitative and quantitative divide: Narrative, ethics and representation in suicidology http://hdl.handle.net/2123/12765 Title: Looking beyond the qualitative and quantitative divide: Narrative, ethics and representation in suicidology Authors: Fitzpatrick, S.J. Abstract: This work is a critical response to renewed debate within the field of suicidology with regard to the value of qualitative research methods. It begins by rejecting the context of the established debate which continues to oppose the qualitative and the quantitative in suicidology. This distinction is considered misleading. Qualitative research is not one thing but many. It is therefore problematic to conceive of it in terms of a dichotomous relationship with quantitative research methods. Using the conceptual and analytical tools of narrative inquiry, this work argues that the debate between quantitative and qualitative methods in suicidology is more than a debate about methods; it is also a debate about ethics, representation, and ways of doing suicidology. These are critical issues for suicidology in that they extend beyond conventional debates about methods and into the ways we conceive of and relate to the subjects of our inquiries. This work makes an argument for suicidology to rethink the contributions of qualitative research at two distinct, yet interrelated levels. Firstly, on the basis of knowledge, where qualitative methods such as narrative – through their very difference – assist in broadening the research endeavour by providing ways of studying phenomena not conducive to quantitative approaches; and secondly, on the basis of ethics, where the way we write about suicidal behaviour and persons as researchers is considered both a moral and political act. Keywords: suicidology, qualitative research, narrative, ethics 2011-01-01T00:00:00Z Preventing perinatal group B streptococcal infection: the jury is still out. http://hdl.handle.net/2123/12762 Title: Preventing perinatal group B streptococcal infection: the jury is still out. Authors: Gilbert, GL Abstract: EVER SINCE GROUPB streptococcus (GBS) emerged as the commonest cause of perinatal sepsis in the late 1970s, there has been controversy about prevention strategies. A few hospitals in Australia were among the first in the world to introduce routine antenatal screening for GBS carriage and intrapartum antibiotic prophylaxis for carriers. This approach was later vindicated by randomised controlled trials in selected carriers and the demonstration of lower rates of sepsis after intrapartum prophylaxis compared with historical rates. However, problems remain. Group B streptococcus is a normal vaginal commensal in healthy women, but colonisation is often intermittent, and rates of colonisation can vary from 18% to 27%, depending on the detection method. Moreover, vaginal carriage is a very crude predictor of perinatal sepsis, with fewer than 1% of the infants of carriers affected (1–2/1000 overall) without intervention. Description: editorial 2002-01-01T00:00:00Z Waste not, want not: new organ donation policy could save lives http://hdl.handle.net/2123/12756 Title: Waste not, want not: new organ donation policy could save lives Authors: Bendorf, A; Newson, A.J. Abstract: Australia has never had a great deceased organ donor rate – and it fell last year. But proposed guidelines from the National Health and Medical Research Council (NHMRC) could change how donor organs are obtained and allocated for the better. DonateLife Australia, the government body responsible for organ donation and transplantation, has just announced there were 16.1 deceased organ donors per million people in Australia in 2014. This represents a 5% decline from 2013 and maintains Australia's deceased organ donor rate in the bottom half of OECD countries. It's important to note, though, that the 2013 rate was the highest ever recorded. More people in this country die waiting for organ transplants than in many other developed countries, but it's not all bad news: Australia has a long and successful history in organ transplantation. Outcomes following organ transplantation are world leading – more than 90% of patients who receive a kidney, heart, heart-lung or liver transplant are alive a year later. And more than 90% of people who receive a transplant have normal function of their new organ. The number of organs retrieved from each deceased donor is also higher than in many countries. Description: The Conversation article 2015-02-12T00:00:00Z Theorizing personhood: for better or for worse http://hdl.handle.net/2123/12751 Title: Theorizing personhood: for better or for worse Authors: Little, M Abstract: Person-centered medicine is emerging as one of the most formidable critiques of evidence-based medicine. One of its claims to priority over patient-centered care, humane medicine, narrative-based medicine and values-based medicine is its attention to the philosophy of personhood. While it defines personhood in widely accepted terms, using adjectives employed by Cassell, such as 'embodied, purposeful, thinking, feeling, emotional, reflective, relational', it offers no examination of the numerous debates and disagreements about personhood. In particular, it has not so far explored the tension that exists between the neo-Lockean account of persistent psychological attributes, such as intention, cognition and rationality and the `animalistic' account that ascribes personhood to human existence, to the human body and brain. Nor has it examined the significance of personhood as an emergent property of human beings imbedded in cultures and societies. Medical ontology is basically realist and its epistemology empiricist. Person-centered medicine faces the task of translating a contested, emergent concept into something realistic and empirically examinable, if it is to persist and have pedagogical purchase. Schectman's 'person-life view' may provide a starting point for conceptualisation and teaching and respect is a relationship that underpins an understanding of personhood, but other guidelines will be needed. Some relevant suggestions are made in this article. Keywords: Discourse, evidence-based medicine, humanism, narrative-based medicine, patient-centered care, person-centered medicine, personhood, person-life view, respect, science, values-based medicine 2014-01-01T00:00:00Z The precarious future of the discourse of person-centered medicine http://hdl.handle.net/2123/12750 Title: The precarious future of the discourse of person-centered medicine Authors: Little, M Abstract: Discourses are more than just patterns of words. For discourse communities, they express ideologies and provide meanings that can be translated into action. They are vehicles for reform when they thrive. The discourse of person-centered medicine has had a vigorous start, with identifiable leaders, a vocabulary which has situated meanings, institutions such as meetings, letterheads and a Society and a group of adherents that constitute a discourse community. For a discourse to thrive, its founding problematic has to be perceived as 'real' by its target audience — in this case, presumably, healthcare workers. Real in this sense can be defined as something perceived to have an influence on foundational values, for better or for worse. It is not yet clear that the discourse of person-centered medicine has convinced its target audience of the 'crisis of knowledge, care, compassion and costs' that it invokes to justify its proposed paradigm shift. In order to make it thrive, those who drive the discourse will need to 'realise' both the crisis it addresses and the outcomes it may achieve. Keywords: Contemporary medicine, discourse, discourse community, entropy, evidence-based medicine, founding problematic, patientcentered care, person-centered medicine, types of discourse 2014-01-01T00:00:00Z Values as 'modest foundations' for medicine http://hdl.handle.net/2123/12749 Title: Values as 'modest foundations' for medicine Authors: Little, M; Gordon, J; Lipworth, W; Markham, P; Kerridge, I Abstract: Medicine and healthcare have been around for thousands of years, but we seldom ask why they are so important. It seems self-evident that we should seek relief of suffering from some institution in the society in which we live and equally selfevident that each society should provide healthcare for its people at some level. Yet when we inquire further, we are driven to seek foundational answers to iterative questions, seeking answers at deeper and deeper levels. Ultimately, it seems best to accept the Humean refuge [1] and finish with some such statement as "Humans are like that" or "Societies can't function in any other way". These Humean questions suggest that survival, security and flourishing are endpoints for such an inquiry and that medical (and many other) systems are built on these implicit foundations. The ways in which societies build relevant systems (such as medicine, welfare, law, transport, housing and so on) will differ strikingly, but common ground will still exist at the foundational level. Acknowledging a commonality of foundations does not commit one either to a conservative normativity, nor to a loose relativism. Increasing activity at the level of the International Court of Justice makes clear that there is a possibility of consensus for judging the validity of the interpretations and enactments of foundational values in any society. The ideals of the American Declaration of Independence — life, liberty and the pursuit of happiness — are principles very similar to the foundational values of survival, security and flourishing. Person-centered medicine is inescapably based on theories of the person and must therefore be able to offer an account of what personhood is. Values underpin the philosophy and practice of medicine, including person-centered medicine, because they are foundations of personhood, as well as foundations of the societies in which each person lives. Keywords: Discourse, evidence-based medicine, foundationalism, medical epistemology, narrative-based medicine, person-centered medicine, reform, values-based medicine 2014-01-01T00:00:00Z Data. Hepatocyte-specific deletion of ARNT (Aryl hydrocarbon Receptor Nuclear Translocator) results in altered fibrotic gene expression in the thioacetamide model of liver injury http://hdl.handle.net/2123/12742 Title: Data. Hepatocyte-specific deletion of ARNT (Aryl hydrocarbon Receptor Nuclear Translocator) results in altered fibrotic gene expression in the thioacetamide model of liver injury Authors: Scott, Christopher; Cha, Kuan; Rao, Renuka; Liddle, Christopher; George, Jacob; Gunton, Jenny. E Description: Raw data and analysis associated with the publication 2015-01-01T00:00:00Z Untested, unproven, and unethical: the promotion and provision of autologous stem cell therapies in Australia http://hdl.handle.net/2123/12736 Title: Untested, unproven, and unethical: the promotion and provision of autologous stem cell therapies in Australia Authors: McLean, A; Stewart, C; Kerridge, I Abstract: An increasing number of private clinics in Australia are marketing and providing autologous stem cell therapies to patients. Although advocates point to the importance of medical innovation and the primacy of patient choice, these arguments are unconvincing. First, it is a stark truth that these clinics are flourishing while the efficacy and safety of autologous stem cell therapies, outside of established indications for hematopioetic stem cell transplantation, are yet to be shown. Second, few of these therapies are offered within clinical trials. Third, patients with chronic and debilitating illnesses, who are often the ones who take up these therapies, incur significant financial burdens in the expectation of benefiting from these treatments. Finally, the provision of these stem cell therapies does not follow the established pathways for legitimate medical advancement. We argue that greater regulatory oversight and professional action are necessary to protect vulnerable patients and that at this time the provision of unproven stem cell therapies outside of clinical trials is unethical. 2015-01-01T00:00:00Z The Children's Attention Project: A community-based longitudinal study of children with ADHD and non-ADHD controls. http://hdl.handle.net/2123/12729 Title: The Children's Attention Project: A community-based longitudinal study of children with ADHD and non-ADHD controls. Authors: Sciberras, E; Schilpzand, EJ; Jongeling, B; Ukoumunne, OC; Efron, D; Anderson, V; Hazell, P; Nicholson, JM 2013-01-01T00:00:00Z Fluoxetine for Autistic Behaviors (FAB trial): study protocol for a randomized controlled trial in children and adolescents with autism. http://hdl.handle.net/2123/12728 Title: Fluoxetine for Autistic Behaviors (FAB trial): study protocol for a randomized controlled trial in children and adolescents with autism. Authors: Mouti, A; Marraffa, C; Wray, J; Kohn, M; Reddihough, D; Hazell, P; Lee, K 2014-06-01T00:00:00Z 'For the Life of Me, I Can't See Why Those Students were Let Go on So Long': Educating the Educators, Aboriginal and Torres Strait IslanderStyle. The Australian Journal of Indigenous Education http://hdl.handle.net/2123/12715 Title: 'For the Life of Me, I Can't See Why Those Students were Let Go on So Long': Educating the Educators, Aboriginal and Torres Strait IslanderStyle. The Australian Journal of Indigenous Education Authors: Plater, S Abstract: In 2008, almost 40% of Aboriginal and Torres Strait Islander students enrolled in the Graduate Diploma in Indigenous Health Promotion at The University of Sydney failed to complete the course. Although this was not considered unusual when compared to previous years, the decision was made to investigate why so many students struggled to meet the expectations of a course that was pedagologically progressive, culturally affirming, taught by highly regarded academics and strongly supported by the University and its stakeholders. A qualitative study using in-depth semi-structured interviews was conducted and many complex and interrelated issues were explored. One issue that was raised both unexpectedly and emphatically by almost half the study participants who completed the course was the unintentional stifling of individual student effort and achievement through the development of co-dependent relationships between academic staff and students. This paper presents the data relevant to this particular issue, reflects on the findings, and outlines some of the strategies implemented since this study commenced that have contributed to a healthy completion rate of 98% over the past three years. 2013-01-01T00:00:00Z Australian's Knowledge and Perceptions of Direct-to-Consumer Personal Genome Testing http://hdl.handle.net/2123/12714 Title: Australian's Knowledge and Perceptions of Direct-to-Consumer Personal Genome Testing Authors: Savard, J; Mooney-Somers, Julie; Newson, A.J.; Kerridge, I Abstract: Background: As direct-to-consumer personal genome testing (DTC-PGT) is increasingly available in Australia, knowledge of Australian's perceptions and attitudes towards his technology is needed in order to assess the (potential) impact it might have on the Australian public and health care system. Aims: To explore the knowledge and perceptions of direct-to-consumer personal genome testing (DTC-PGT) in an Australian sample. Methods: An online survey asking about knowledge and perceptions of DTC-PGT, undertaken between October 2011 and April 2012, of 270 Australian residents. Results were analysed using SAS. Results: Our study found limited consumer knowledge of, and interest in pursuing DTC-PGT in Australia. 93% of respondents correctly identified DTC-PGT as available to consumers directly, but only 40% correctly identified its availability in Australia. When asked about the content and value of the information DTC-PGT provides, the majority of respondents indentified that DTC-PGT could provide information about one's health and/or ancestry (82% and 74%). Additionally, respondents indicated they believed this information to be equally important as non-genetic information about one's ancestry and health. Conclusion: While few respondents expressed an intention to pursue DTC-PGT (27%), the majority of people, irrespective of whether they wished to pursue it or not, believed that genetic information was as important as non-genetic information in regards to their health and their ancestry. The value ascribed to genetic information suggests genetics plays a role in people's lives and at this time, further qualitative research could explore the ways in which people might use and understand the genetic information provided by DTC-PGT. Keywords: predictive genetic testing, consumer health information, ethical issues, survey methodology 2014-01-01T00:00:00Z Children with lesbian parents: A community study http://hdl.handle.net/2123/12713 Title: Children with lesbian parents: A community study Authors: Golombok, S; Perry, B; Burston, A; Murray, C; Mooney-Somers, Julie; Stevens, M; Golding, J Abstract: Existing research on children with lesbian parents is limited by reliance on volunteer or convenience samples. The present study examined the quality of parent-child relationships and the socio-emotional and gender development of a community sample of 7-year-old children with lesbian parents. Families were recruited through the Avon Longitudinal Study of Parents and Children, a geographic population study of 14,000 mothers and their children. Thirty-nine lesbian-mother families, 74 two-parent heterosexual families, and 60 families headed by single heterosexual mothers were compared on standardized interview and questionnaire measures administered to mothers, co-mothers/fathers, children, and teachers. Findings are in line with those of earlier investigations showing positive mother-child relationships and well-adjusted children. 2003-01-01T00:00:00Z Parents as Advocates for the Psychosocial Survival of Adolescents and Young Adults with Cancer http://hdl.handle.net/2123/12710 Title: Parents as Advocates for the Psychosocial Survival of Adolescents and Young Adults with Cancer Authors: Lewis, P; Mooney-Somers, Julie; Jordens, C; Kerridge, I Abstract: Many young people with cancer have a parent or parents who care for them during their hospitalisation and treatment, and remain an important part of their lives after the 'crisis' has passed and young people have moved into survivorship. This qualitative study explored the impact of cancer diagnosis, treatment and survival during adolescence and young adulthood on the practice and experiences of parenting. We conducted focus groups with a total of 22 parents of young people diagnosed with various cancers between the ages of 11 and 19 years old. The results indicated that parents advocated for their offspring in different ways at different points of the cancer journey. Parents used their parental knowledge of their offspring to secure a medical diagnosis and treatment, developed medical knowledge to advocate for appropriate treatment within the medical system, and then used parental and medical knowledge to advocate for their offspring's successful psychosocial survival. In this final point in the journey, parents entered social worlds from which they would normally be absent and some went to great lengths to ensure their offspring were not socially disadvantaged. Key Words: Adolescent, Young Adult, Parent, Cancer 2014-01-01T00:00:00Z The Medical Humanities: A brief introduction http://hdl.handle.net/2123/12709 Title: The Medical Humanities: A brief introduction Authors: Hooker, C Abstract: The medical humanities is a broad area of study and practice encompassing all nontechnical or 'human' aspects of medicine. This article introduces a series in the medical humanities in Australian Family Physician. The medical humanities serve three main goals: the study of the human aspects of medicine from within traditional arts disciplines of history, philosophy, sociology and literature; the intersection of medicine and the creative arts; and the training of more insightful and compassionate doctors. This article briefly explores these three goals and discusses their value for the medical community. 2008-01-01T00:00:00Z Review: "From chance to choice: genetics and justice" by Allen Buchanan, Dan W. Brock, Norman Daniels and Daniel Wikler http://hdl.handle.net/2123/12703 Title: Review: "From chance to choice: genetics and justice" by Allen Buchanan, Dan W. Brock, Norman Daniels and Daniel Wikler Authors: Newson, A.J. Abstract: A Buchanan, D W Brock, N Daniels, et al. Cambridge University Press, 2000, £17.95, $US29.95, pp 398. ISBN 0521660017 With over 10 000 bases of DNA being sequenced around the world per minute, it is vital that ethical discussion continues to keep pace with genetic research. This contribution by four top theorists in bioethics carefully considers the implications of the many ways genetic information will influence human health and reproduction, by considering "the most basic moral principles that would guide public policy and individual choice concerning the use of genetic interventions in a just and humane society" (4–5). Proceeding with the themes of rights, justice, and harm, problems addressed by the authors include: the significance of the moral difference between treating genetic disease and altering personality characteristics; whether the utilisation of prenatal interventions to avoid disability discriminates against the disabled, and who should have control over the utilisation of this technology. The main focus of the work is upon the future of genetics, however this is framed within an "ethical autopsy" of eugenics, in which the inappropriateness of past practices is considered. It is argued that the wrongs of eugenics (broadly, a denial of freedom) must be recognised when considering what an ethical practice should now constitute, but that wanting to provide future generations with genes that could contribute to their lives going better is not necessarily unpalatable. It is vital, however, that any such procedures are pursued justly. Description: book review 2002-01-01T00:00:00Z Pap smear rates among Australian community-attached lesbian and bisexual women: some good news but disparities persist http://hdl.handle.net/2123/12702 Title: Pap smear rates among Australian community-attached lesbian and bisexual women: some good news but disparities persist Authors: Douglas, C; Deacon, R; Mooney-Somers, Julie Abstract: Background: Research in the US and UK shows lesbian women are less likely than their heterosexual peers to attend for routine Pap smear tests. This study examined Pap smear test rates among community-attached lesbian, bisexual and queer (LBQ) women in New South Wales, to investigate if rates had changed between 2002 and 2012, compare rates to the general NSW population and identify predictive factors for Pap smear test attendance. Method: Data was taken from the Sydney Women and Sexual Health (SWASH) survey, a self-completed biennial questionnaire of LBQ women's health and wellbeing. Results: Of the 4083 respondents, 83% had ever had a Pap smear test. Recent attendance rates were slightly higher than the general population. Significant predictors for ever having attended for a Pap smear test were older age, post-year 12 education, ever having had an STI test, being out about sexuality to a regular doctor and ever having had sex with men. Conclusions: Pap smear rates for LBQ women are encouraging when compared to rates in similar countries. A significant proportion of LBQ women are never receiving Pap smear tests. Predictive factors suggest a continued perception that women who have not had sex with men are not at risk of HPV, and highlight the importance of health providers providing a safe and welcoming environment for LBQ women to openly discuss their health. 2015-01-01T00:00:00Z Cascade testing in Familial Hypercholesterolaemia: how should family members be contacted? http://hdl.handle.net/2123/12701 Title: Cascade testing in Familial Hypercholesterolaemia: how should family members be contacted? Authors: Newson, A.J.; Humphries, S.E. Abstract: Cascade testing or screening provides an important mechanism for identifying people at risk of a genetic condition. For some autosomal dominant conditions, such as Familial Hpercholesterolaemia (FH), identifying relatives allows for significant health-affecting interventions to be administered, which can extend a person's life expectancy significantly. However, cascade screening is not without ethical implications. In this paper, we examine one ethically contentious aspect of cascade screening programmes, namely the alternative methods by which relatives of a proband can be contacted. Should the proband be responsible for contacting his or her family members, or should the screening programme contact family members directly? We argue that direct contact is an ethically justifiable method of contact tracing in cascade screening for FH. Not only has this method of contact already been utilised without adverse effects, an examination of the ethical arguments against it shows these are unsubstantiated. We describe several criteria which, if met, will allow an appropriate balance to be struck between maximising the efficiency of family tracing and respecting the interests of probands and their relatives. Keywords Cascade genetic screening; cascade testing; confidentiality; autonomy; genetics; ethics; guidelines; familial hypercholesterolaemia 2005-01-01T00:00:00Z The nature and significance of behavioural genetic information http://hdl.handle.net/2123/12700 Title: The nature and significance of behavioural genetic information Authors: Newson, A.J. Abstract: In light of the human genome project, establishing the genetic aetiology of complex human diseases has become a research priority within Western medicine. However, in addition to the identification of disease genes, numerous research projects are also being undertaken to identify genes contributing to the development of human behavioural characteristics, such as cognitive ability and criminal tendency. The permissibility of this research is obviously controversial: will society benefit from this research, or will it adversely affect our conceptions of ourselves and each other? When assessing the permissibility of this research, it is important to consider the nature and deterministic significance of behavioural genetic information. Whilst to date there has been much discussion and debate about the properties of genetic information per se and genetic determinism, this has not been applied to behavioural genetic research and its ethical implications. Therefore, this paper elucidates how behavioural genetic information can be distinguished from different from other types of genetic and non-genetic information and also synthesises the determinative significance of genetic factors for the development of human behavioural traits. Undertaking this analysis enables the ethical issues raised by this research to be debated in an appropriate context and indicates that separate policy considerations are warranted. Key Words: Behavioural genetics, genetic determinism, genetic information. 2004-01-01T00:00:00Z Artificial gametes: new paths to parenthood? http://hdl.handle.net/2123/12699 Title: Artificial gametes: new paths to parenthood? Authors: Newson, A.J.; Smajdor, A.C. Abstract: A number of recent papers have described the successful derivation of egg and sperm precursor cells from mouse embryonic stem cells—so-called "artificial" gametes. Although many scientific questions remain, this research suggests numerous new possibilities for stem cell research and assisted reproductive technology, if a similar breakthrough is achieved with human embryonic stem cells. The novel opportunities raised by artificial gametes also prompt new ethical questions, such as whether same-sex couples should be able to access this technology to have children who are genetically related to them both. 2005-01-01T00:00:00Z The fallacy of the bolted horse: changing our thinking about mature-age Aboriginal and Torres Strait Islander university students http://hdl.handle.net/2123/12698 Title: The fallacy of the bolted horse: changing our thinking about mature-age Aboriginal and Torres Strait Islander university students Authors: Plater, S; Mooney-Somers, Julie; Lander, J Abstract: The aim of this paper is to critically review and analyse the public representations of mature-age university students in developed and some developing nations and how they compare to the public representations of mature-age Aboriginal and Torres Strait Islander university students in Australia ('students' also refers to graduates unless the context requires specificity). Relevant texts were identified by reviewing education-related academic and policy literature, media opinion and reportage pieces, conference proceedings, and private sector and higher education reviews, reports and submissions. What this review reveals is striking: very few commentators are publicly and unambiguously encouraging, supporting and celebrating mature-age Aboriginal and Torres Strait Islander university students. This strongly contrasts with the discussions around mature-age university students in general, where continuous or lifelong learning is acclaimed and endorsed, particularly as our populations grow older and remain healthier and there are relatively lower numbers of working-age people. While scholars, social commentators, bureaucrats and politicians enthusiastically highlight the intrinsic and extrinsic value of the mature-age student's social and economic contributions, the overarching narrative of the mature-age Aboriginal and Torres Strait Islander student is one of 'the horse has bolted', meaning that it is too late for this cohort and therefore society to benefit from their university education. In this paper we examine these conflicting positions, investigate why this dichotomy exists, present an alternative view for consideration and make recommendations for further research into this area. 2015-01-01T00:00:00Z Enacting Internal Coherence as a Path to Quality in Qualitative Inquiry http://hdl.handle.net/2123/12691 Title: Enacting Internal Coherence as a Path to Quality in Qualitative Inquiry Authors: Carter, SM Abstract: In this chapter, I am going to make an argument about how to judge quality and do quality in qualitative research, I'm a little trepidatious taking this on: it's an old subject and many great authors have written on it elegantly (just a few examples: Angen, 2000; Barbour, 2001; Flick, 2007; Mason, 2002; Seale, 1999). People come to blows over the quality of qualitative research, perhaps because it goes to the question of whether it's worth doing research at all. Questions about quality are a big deal. 2010-01-01T00:00:00Z Essentially Whose Genes http://hdl.handle.net/2123/12690 Title: Essentially Whose Genes Authors: Lipworth, W Abstract: The race to map the human genome is over. While this has the potential, in time, to transform medical research, diagnostics and therapeutics, the moral implications of genetic inquiry have dominated public discussion. Concerns relating to genetic privacy and property, in areas as diverse as health care, medical research, employment, insurance, law enforcement and sport, have become a matter of increasing public and professional debate. In an attempt to deal with these issues, the Australian Law Reform Commission (ALRC) was asked to conduct an inquiry into the protection of human genetic information. In May 2003, the commission released the report Essentially Yours: The Protection of Human Genetic Information in Australia. This was the product of a two-year inquiry by the ALRC and the Australian Health Ethics Committee (AHEC) of the National Health and Medical Research Council (NHMRC). The title of the document suggests that the subject would be of great significance to the public, a view reinforced in a media release, which hailed ALRC 96 a "landmark report into the protection of human genetic information". The inquiry generated 144 recommendations. Not surprisingly, given the title of the report, these emphasised protection of genetic privacy and property through, for example, establishment of a Human Genetics Commission of Australia, strengthening the roles of research ethics committees and the development of protective legislation including taws on information privacy, control of human tissue and prevention of discrimination. It is sometimes easier to grasp issues by creating a scenario. Imagine that a 50-year-old man has a colonoscopy and a bowel polyp is discovered. A biopsy is taken (tissue is removed) leading to a diagnosis of bowel cancer. The biopsy specimen is not discarded, but stored in a "tissue bank". Bowel cancer researchers subsequently seek access to this tissue to study the genetics of bowel cancer (comparing the genetic make-up of tumor cells with normal cells). Under present legislation, the man does not need to be asked if his tissue can be stored or used in this way, and it is possible that his genetic information may get into the hands of other health-care workers, employers or insurance companies. If adopted, the inquiry's recommendations would attempt to ensure that full and informed consent is obtained for both storage and research, and that the man's genetic privacy is protected. An examination of the history of genetics demonstrates that exploitation and breath of privacy are real possibilities and that protective measures are necessary. In develop-ing its recommendations, the inquiry responded to specific terms of reference that included consideration of whether and to what extent a regulatory framework was needed to protect the privacy of samples and information and to provide protection from inappropriate discriminatory use of them. The recommendations are clearly aimed at meeting these challenges and, to a large extent, they succeed. Upon closer examination, however, there is reason to suspect that, from a philosophical perspective, the inquiry did not reach its potential or realise the claim in its executive summary to be "the most comprehensive consideration of the ethical, legal and social implications of the 'New Genetics' ever undertaken". This paper critically examines the philosophical basis of the inquiry and the manner in which it carried out its ethical deliberations on the status of genetic information. 2004-01-01T00:00:00Z


text:
Alright, despite the gag order, let's talk again about the Mall Crawl, Boulder's infamous Halloween celebration that took place on the Pearl Street Mall for the better part of the '80s.
The Mall Crawl was a gigantic gathering of drunken revelers that swarmed the Pearl Street Mall every Halloween until there were so many people committing so many different crimes that police had to shut it down.
Last year on Oct. 31, thousands of people still descended on Pearl Street's bars, to the point where there were lines out the door, even for the mall's least appealing establishments. Drum circles formed on the steps around the planters. People unabashedly danced to them. Sarah Palin/John McCain was the hot costume.
Also, police ticketed about a dozen people for putting pumpkins on their heads and frolicking naked across a city block, and they plan to do the same this year. Just blocks from Pearl Street, assailants punched a man and questioned his patriotism because he was Asian- American. And equally nearby, a woman was assaulted and gang-raped while walking home, the first of a slew of terrifying nighttime sexual assaults to happen in the following months.
The point is, bearing the "Mall Crawl" label or not, Halloween in Boulder is rowdy, intense and alcoholic. Last week, police knocked on the doors of two men who created a Facebook group the men created to revive the Mall Crawl. They reportedly threatened the men with legal action and said they would be held responsible for any costs incurred by the city should the Mall Crawl proceed. The men backed off and changed the name of the group to "The Artist Formerly Known as 'Bring back the Boulder Mall Crawl!'" But no amount of "preventative" policing will stop the thousands of Boulder residents who frequent the mall every year from returning for another Halloween. And if some property damage occurs from people who don't know what the Mall Crawl is (as is the case with most people under 30), will the two men still be held responsible? What determines whether a mob is acting of its own volition rather than acting as part of a loosely organized event? When will Boulder police focus more on preventing assaults and rapes in our neighborhoods and less on ticketing naked people and stopping peaceful gatherings on Pearl Street Mall?
Lizards get day in the sun
So, if you happen to own a tiny snake with legs, this item is for you.
The Colorado Reptile Humane Society (CoRHS) is hosting a "Caring for Small Lizards Workshop" from 10 a.m. to noon on Saturday, Oct. 10, at what we assume are the CoRHS headquarters in Longmont, at 13941 Elmore Road.
"Tune up your care of leopard geckos, bearded dragons, and other small lizards," the news release says. "Learn about proper habitats, enrichment, lighting and heating, diet, safe handling, shedding and identification of common health issues."
There is a $10 donation and limited seating, so register by sending e-mail to email@example.com or by calling 303-776- 2070. Or check out www.corhs.org for more information about the organization.
And let us know how it goes, on a "scale" of 1 to 10.
Houston, we have a statue
If you were looking for ways to raise money for the Astronaut Scholarship Foundation, maybe you thought about acquiring one of 22 uniquely painted, eight-foot-long space shuttle statues at an Oct. 18 auction, held online at www.astronautscholarship.org/shuttles. The website blasts the headline, "Bet the Joneses don't have one of these!" If you're reading this on Oct. 8, it's not too late to bid on this possible conversation piece for the corner of your living room!
These handcrafted keepsakes are all autographed by real, live astronauts.
"Other cities have auctioned statues ... of just about anything else you could imagine," said astronaut Robert Crippen, who flew the first space shuttle mission in 1981. "The space shuttle is our icon, the country's icon, and we're proud to add these statues to the mix."
A news release states, "After making their re-entry from an eight-month tour the shuttles are back together and ready to receive their final flight coordinates at the Oct. 8 auction conclusion."
Proceeds benefit the foundation, which provides scholarships to top science and technology students around the country.
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subset: commoncrawl