https://hdl.handle.net/2123/10565 2026-06-13T13:03:16Z https://hdl.handle.net/2123/35278 The promise of public health ethics for precision medicine: the case of newborn preventive genomic sequencing Newson, A.J. Precision medicine aims to tailor medical treatment to match individual characteristics and to stratify individuals to concentrate benefits and avoid harm. It has recently been joined by precision public health-the application of precision medicine at population scale to decrease morbidity and optimise population health. Newborn preventive genomic sequencing (NPGS) provides a helpful case study to consider how we should approach ethical questions in precision public health. In this paper, I use NPGS as a case in point to argue that both precision medicine and precision public health need public health ethics. I make this argument in two parts. First, I claim that discussions of ethics in precision medicine and NPGS tend to focus on predominantly individualistic concepts from medical ethics such as autonomy and empowerment. This highlights some deficiencies, including overlooking that choice is subject to constraints and that an individual's place in the world might impact their capacity to 'be responsible'. Second, I make the case for using a public health ethics approach when considering ethics and NPGS, and thus precision public health more broadly. I discuss how precision public health needs to be construed as a collective enterprise and not just as an aggregation of individual interests. I also show how analysing collective values and interests through concepts such as solidarity can enrich ethical discussion of NPGS and highlight previously overlooked issues. With this approach, bioethics can contribute to more just and more appropriate applications of precision medicine and precision public health, including NPGS. 2022-01-01T00:00:00Z https://hdl.handle.net/2123/34835 Genetic counselling: genomic uncertainties Newson, Ainsley J; Ormond, Kelly E Genomic sequencing technologies are increasingly used in health. Improvements in sequencing technology and reductions in its cost mean that the default approach is frequently to obtain more genomic information rather than less. However, the volume of genomic data does not necessarily track with its ability to be interpreted, and it is widely acknowledged that genomic sequencing can increase, rather than resolve, uncertainty for patients and their families. Uncertainty in genomics impacts both professionals and patients. The near certainty of uncertainty should be factored into all elements of the genetic and genomic testing process, from initial test offer to longer-term follow-up. In some circumstances, uncertainty can provide a valid reason to restrict the scope of testing. Given its resource implications, uncertainty in genomics should also be considered at the health system level. Ethical provision of genomic sequencing in health care necessitates both planning for uncertainty and minimising its impact on all stakeholders. 2025-01-01T00:00:00Z https://hdl.handle.net/2123/34283 Women in contact with the Sydney LGBTQ communities: Report of the SWASH Lesbian, Bisexual and Queer Women’s Health Survey 2022 Mooney-Somers, Julie; Deacon, Rachel; Anderst, Jacek; Barker, Anna; Watson, Lucy; Blake, Samantha; Wang, Lee; Gillmore, Tenley; Rees, Rebekka SWASH is the longest running periodic survey of LBQ women’s health and wellbeing in the world. SWASH was born of a need to generate evidence to inform health promotion efforts to enhance the health of LBQ women. In 1996, the SWASH survey (then called the Sydney Women and Sexual Health survey) was 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 health promotion work. Concern had been voiced about the possibility of HIV spreading from gay men to the ‘general community’; the first SWASH survey focused on sexual and injection-related HIV transmission risks and was addressed to all women in social contact with gay and lesbian communities in Sydney. Running every two years since 1996, SWASH has become a comprehensive survey of important health issues relevant to lesbian, bisexual, queer (LBQ) and other non-heterosexual identifying women engaged with Sydney’s lesbian, gay, bisexual, transgender and queer (LGBTQ) communities. The survey covers sexual health and wellbeing, experiences of violence, mental health, tobacco use, illicit drug use, alcohol consumption, and cancer screening behaviours. SWASH operates as a collaboration between university researchers and ACON. Together we revise the survey to reflect the changing needs of LGBTQ communities, recruit participants, and work to disseminate the findings. A lack of systematic, nuanced research on the health and wellbeing of Australian lesbian, bisexual and queer (LBQ) women has been a significant barrier to understanding, recognising and addressing their health needs. A range of social, psychological and economic factors mean that this group has poorer health outcomes than their heterosexual peers. Stigma, family and community rejection and discrimination towards LBQ women can impact on health and wellbeing, the delivery of health services, and their access to services. While research on LGBTQ people has increased over time, sexuality and gender indicators are seldom included in large epidemiological surveys. Or data is only disaggregated by sexuality (e.g. heterosexual vs non-heterosexual people). We need to understand the intersections of gender and sexuality. SWASH provides a much-needed local evidence base about LBQ women in New South Wales to inform policy and best practice in healthcare and prevention for chronic diseases, mental health and wellbeing, sexual and reproductive health and ageing. This report presents results from the survey conducted at the Mardi Gras Fair Day and other community events and venues during the Sydney Gay and Lesbian Mardi Gras season in 2022. 2024-01-01T00:00:00Z https://hdl.handle.net/2123/32091 Therapeutic misunderstandings in modern research Heynemann, Sarah; Lipworth, Wendy; McLachlan, Sue-Anne; Philip, Jennifer; John, Tom; Kerridge, Ian Clinical trials play a crucial role in generating evidence about healthcare interventions and improving outcomes for current and future patients. For individual trial participants, however, there are inevitably trade-offs involved in clinical trial participation, given that trials have traditionally been designed to benefit future patient populations rather than to offer personalised care. Failure to understand the distinction between research and clinical care and the likelihood of benefit from participation in clinical trials has been termed the ‘therapeutic misconception’. The evolution of the clinical trials landscape, including greater integration of clinical trials into healthcare and development of novel trial methodologies, may reinforce the significance of the therapeutic misconception and other forms of misunderstanding while at the same time (paradoxically) challenging its salience. Using cancer clinical trials as an exemplar, we describe how methodological changes in early- and late-phase clinical trial designs, as well as changes in the design and delivery of healthcare, impact upon the therapeutic misconception. We suggest that this provides an impetus to re-examine the ethics of clinical research, particularly in relation to trial access, participant selection, communication and consent, and role delineation. 2023-01-01T00:00:00Z https://hdl.handle.net/2123/29016 Experiences of risk in Australian hotel quarantine: a qualitative study Haire, Bridget; Gilbert, Gwendolyn L.; Kaldor, John M.; Hendrickx, David; Dawson, Angus; Williams, Jane H. BackgroundIn response to the threat of COVID-19 infection, Australia mandated a 14 day quarantine period in a designated facility for all travellers returning from overseas from late March 2020. These facilities were usually hotels, or hotel-like serviced apartments, and also included a repurposed former mining village in the Northern Territory. This paper aimed to investigate the experiences of risk of people quarantined in designated supervised facilities in Australia, which has not been systematically explored before.MethodsIn this qualitative study semi-structured interviews were conducted with 58 participants quarantined between March 2020 and January 2021. Participants were returned Australian citizens and residents who were required to undergo mandatory supervised quarantine for COVID-19. Interviews were conducted using video teleconferencing (via Zoom), transcribed and coded, then analysed thematically.ResultsWhile participants generally supported the concept of quarantine to protect the Australian public, they were critical of elements of it where they felt exposed to risk (COVID-related or not). They also described instances where infection control within the system seemed inadequate. For some, particularly those quarantined with small children, they reported that the facilities were inadequate or inappropriate for health and wellbeing. Using thematic analysis, three major themes were identified that related to problems in the existing system: perception of being subjected to high risk through lax standards of COVID protection in the quarantine process; risks to the community identified in quarantine; and risk in non-hotel managed quarantine facilities.ConclusionsThere are systemic issues with infection control in hotel quarantine, which can be further undermined by individual non-compliance. Risks to safety for those in quarantine can be reduced, both in terms of infection control within hotel quarantine and, in the case of the Northern Territory facility, timely in-person medical care as needed for non-COVID conditions. Systems of infection control need ongoing review to ensure that people entering quarantine are protected from known risks of infection at every stage. Medical services in quarantine facilities should be examined to ensure timely and appropriate non-COVID medical services are available. 2022-01-01T00:00:00Z https://hdl.handle.net/2123/28373 Response - Liminality and the Mirage of Settlement Hooker, Claire; Kerridge, Ian Little and colleagues’ (1998) paper describing a key aspect of cancer patients’ experience, that of “liminality,” is remarkable for giving articulation to a very common and yet mostly overlooked aspect of patient experience. Little et. al. offered a formulation of liminality that deliberately set aside the concept’s more common use in analysing social rituals, in order to grasp at the interior experience that arises when failing bodily function and awareness of mortality are forced into someone’s consciousness, as occurs with a diagnosis of cancer. We set out the reasons as to why this analysis was so significant in 1998—but we also consider how the “liminality” described by Little and colleagues was (as they suggested) a feature of modernity, founded on what we term “the mirage of settlement.” We argue that this mirage is impossible to sustain in 2022 amid the many forms of un-settling that have characterized late modernity, including climate change and COVID-19. We argue that many people in developed nations now experience liminality as a result of the being forced into the consciousness of living in a continued state of coloniality. We thus rejoin the social aspects of liminality to the interior, Existential form described by Little et. al. 2022-01-01T00:00:00Z https://hdl.handle.net/2123/28317 The abandonment of Australians in India: an analysis of the right of entry as a security right in the age of COVID-19 Silva, Diego S. In May 2021, when the Delta variant of SARS-CoV2 was wreaking havoc in India, the Australian Federal Government banned its citizens and residents who were there from coming back to Australia for 14 days on penalty of fines or imprisonment. These measures were justified on the grounds of protecting the broader Australian public from potentially importing the Delta strain, which officials feared would then seed a local outbreak. Those Australians stranded in India, and their families and communities back home, claimed that they were abandoned by Prime Minister Scott Morrison's government. This case-along with other barriers used as part of border control measures in the name of public health-raises the following question: is it ever morally permissible for a state to ban its citizens and residents from entering their own country during a pandemic? I conclude that it's impermissible. I argue that persons have a right of entry that should be understood as a security right. This security right should be non-derogable because it's a foundational good that is necessary for life-planning purposes. Moreover, it is a right that people should be able to rely upon absolutely, even during pandemics. At the very least, should someone believe that there are rare exceptions to the right of entry on public health grounds, governments have a duty-grounded in the principle of reciprocity-to support those who are temporarily denied entry. In the case of Australians stranded in India, I will argue that the Australian Federal Government failed on all accounts. 2022-01-01T00:00:00Z https://hdl.handle.net/2123/28182 Sexuality and Gender Diverse Populations Mooney-Somers, Julie; Black, Nicola; Memedovic, Sonja; Lea, Toby; Roxburgh, Amanda This chapter reviews the risk factors and treatment options for sexuality and gender diverse populations. Sexuality is a person’s sense of themselves as a sexual person and usually reflects their sexual attraction and sexual practice. Heterosexual people are sexually attracted to people of the opposite gender, lesbian women are sexually attracted to other women, gay men are sexually attracted to other men, bisexual people are sexually attracted to people of any gender, and queer people are sexually attracted to people of all genders (queer is also an umbrella term for sexuality and gender diverse people). Evidence from three nationally representative surveys suggests 3.2% of Australian adults report a non-heterosexual identity . Gender identity means the sense a person has of having a particular gender. Cisgender people identify with the sex they were assigned at birth, transgender people’s gender does not align with the sex they were assigned at birth. Most transgender people identify as either woman/ female or man/male, however people who feel their gender does not align with either female or male, or exclusively with male or female, use the terms non-binary or gender fluid. There is no reliable evidence on the proportion of gender diverse people in Australia; a systematic review of US population-based surveys provided a population estimate of 0.5%. Establishing an evidence base for patterns of alcohol use and treatment outcomes among sexuality and gender diverse people is challenging. Sexuality and/or gender identity are rarely captured in large surveys and treatment studies, and markers are not included in the Alcohol and Other Drug Treatment Services National Minimum Data Set for all government funded alcohol and other drug treatment specialist services. 2021-01-01T00:00:00Z https://hdl.handle.net/2123/27034 COVID-19 restrictions should only be lifted when it is safe to do so for Aboriginal communities Komesaroff, Paul A.; Chee, Donna Ah; Boffa, John; Kerridge, Ian; Tilton, Edward The NSW Government has proposed a blanket lifting of COVID-19 restrictions when the proportion of fully vaccinated people rate reaches 70% of the adult population. If implemented, this would have devastating effects on Aboriginal populations. At the present time, vaccination rates in Aboriginal communities remain low. Once restrictions are lifted, unvaccinated people will be at high risk of infection. The risks of serious illness and death among Aboriginal people from a variety of medical conditions are significantly greater than for the wider population. This is also the case with COVID-19 in First Nations populations around the world. The vulnerability of Aboriginal people is an enduring consequence of colonialism and is exacerbated by the fact that many live in overcrowded and poorly maintained houses in communities with under-resourced health services. A current workforce crisis and the demographic structure of the population have further hindered the effectiveness of vaccination programmes. Aboriginal organisations have called on state and federal governments to delay any substantial easing of restrictions until full vaccination rates among Aboriginal and Torres Strait Islander populations aged 16_years and older reach 90-95%. They have also called for additional support in the form of supply of vaccines, enhancement of workforce capacity and appropriate incentives to address hesitancy. Australia remains burdened by the legacy of centuries of harm and damage to its First Nations people. Urgent steps must be taken to avoid a renewed assault on Aboriginal and Torres Strait Islander health. 2021-01-01T00:00:00Z https://hdl.handle.net/2123/26523 Policy considerations for mandatory COVID_19 vaccination from the Collaboration on Social Science in Immunisation Leask, Julie; Seale, Holly; Williams, Jane H; Kaufman, Jessica; Wiley, Kerrie; Mahimbo, Abela; Clark, Katrina K; Danchin, Margie H; Attwell, Katie Public attention is increasingly turning towards how Australia can achieve the very high vaccination coverage needed for optimal control of the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) virus. Governments and businesses have already mandated coronavirus disease 2019 (COVID-19) vaccination for workers in certain sectors, and vaccination is now required for domestic air travel to Western Australia. International air travel is likely to involve vaccination requirements in future, as is already the case in other countries. Each new outbreak, with its restrictive public health measures, will see public pressure to mandate COVID-19 vaccination in other settings where people gather. 2021-01-01T00:00:00Z https://hdl.handle.net/2123/26323 Consumer perspectives of accelerated access to medicines: A qualitative study. Pace, J; Ghinea, N; Pearson, S; Kerridge, I; Lipworth, W Purpose In this study, we aimed to explore consumer perspectives on accelerated access to medicines. We were particularly interested in how they balance competing considerations of safety, efficacy, equity and access; whether and how their views change when there are different levels of uncertainty surrounding the safety and efficacy of new medicines; and the procedures that they think should be used to make decisions about accelerated access to new medicines. Design/Methodology/Approach This was an exploratory qualitative study. Thirteen semi-structured interviews with patient advocates and two focus groups with patients were conducted and analysed thematically. Interviews and focus groups were audio recorded and transcribed verbatim. Data were analysed through inductive thematic analysis. Findings Participants outlined a range of justifications for accelerated access, including addressing unmet medical needs and encouraging further research and development. However, they were also cognisant of the potential risks and viewed ongoing data collection, disinvestment and market withdrawal as ways to address these. They also emphasised the importance of transparent decisions being made by people with relevant expertise, based on a thorough consideration of scientific evidence and stakeholder perspectives. Originality This is the first study to comprehensively explore Australian consumers’ views of accelerated access to medicines. Our results suggest that consumers want timely access to new medicines, but not at the expense of safety, efficacy, equity and sustainability. While accelerated access programs are likely to be welcomed by consumers, they must be fully informed of their conditions and limitations, and robust post-market data surveillance must be implemented and enforced to protect the interests of both individual patients and the broader community. 2021-01-01T00:00:00Z https://hdl.handle.net/2123/26322 Regulatory authority and clinical acceptability: Physicians’ responses to regulatory drug safety warnings Bhasale, A; Sarpatwari, A; Lipworth, W; Møllebæk, M; McEwin, E; Gautam, N; Santiago, O; Mintzes, B Aim Medicines regulators issue post-market safety warnings to advise of newly uncovered risks, but with mixed impacts. We aimed to identify factors influencing the use of regulatory warnings by primary care and specialist physicians in the US and Australia. Methods Semi-structured qualitative interviews with 40 primary care physicians, endocrinologists, and other generalist specialists in Boston USA and Australia. Coding and analysis were carried out inductively and iteratively to identify and examine key factors. Analysis centred around four areas; physicians’ awareness of drug safety information, preferred information sources, opinion-forming, and sharing of information with patients. Results Uncertainty, trust, and clinical authority emerged as factors influencing use of advisories. Although regulators were trusted as authoritative institutions, they appeared to lack clinical authority, and physicians validated regulatory information against other trusted sources including evidence, expert opinion, and experience. Specialists became aware of drug safety issues through specialised literature, using evidence and clinical consensus to form opinions. Primary care physicians, fielding high volumes of information, relied on convenient, accessible information sources including the media and the ‘clinical grapevine’ for awareness, and on clinical colleagues, specialists, and experience for interpretation. Communicating risk to patients was complicated by uncertainty; physicians tailored information to patients’ health literacy and information needs. US physicians were more aware of their national regulator’s post-market safety role than Australian physicians of theirs. Conclusion Drug safety warnings may not be optimally received or used. Regulators should consider strategies that increase trust, clinical relevance, and accessibility, and address physicians’ needs in communicating risk to patients. 2021-01-01T00:00:00Z https://hdl.handle.net/2123/25571 Balancing Bioethics by Sensing the Aesthetic Macneill, Paul This paper is critical of ‘bioethics’ as it is widely understood and taught, noting in particular an emphasis given to philosophical justification, reason and rationality. It is proposed that ‘balancing’ bioethics be achieved by giving greater weight to practice and the aesthetic: defined in terms of sensory perception, emotion and feeling. Each of those three elements is elaborated as a non-cognitive capacity and, when taken together, comprise aesthetic sensitivity and responsiveness. This is to recognise the aesthetic as a productive element in bioethics as practice. Contributions from the philosophy of art and aesthetics are drawn into the discussion to bring depth to an understanding of ‘the aesthetic’. This approach is buttressed by philosophers—including Foucault and 18th century German philosophers (in particular Kant)—who recognised a link between ethics and aesthetics. The paper aims to give substance to a claim that bioethics necessarily comprises a cognitive component, relating to reason, and a non-cognitive component that draws on aesthetic sensibility and relates to practice. A number of advantages of bioethics, understood to explicitly acknowledge the aesthetic, are proffered. Having defined bioethics in conventional terms, there is discussion of the extent to which other approaches to bioethics (including casuistry, virtue ethics, and narrative ethics) recognise aesthetic sensitivity in their practice. It is apparent that they do so to varying extents although not always explicitly. By examining this aspect of applied ethics, the paper aims to draw attention to aesthetic sensitivity and responsiveness as integral to ethical and effective health care. 2017-01-01T00:00:00Z https://hdl.handle.net/2123/24901 A framework for ethics review of applications to store, reuse and share tissue samples Then, Shih-Ning; Lipworth, W; Stewart, Cameron; Kerridge, I The practice of biobank networking—where biobanks are linked together, and researchers share human tissue samples—is an increasingly common practice both domestically and internationally. The benefits from networking in this way are well established. However, there is a need for ethical oversight in the sharing of human tissue. Ethics committees will increasingly be called upon to approve the sharing of tissue and data with other researchers, often via biobanks, and little guidance currently exists for such committees. In this paper, we provide a structured approach to the ethical review of on-sharing of data and tissue for research purposes. 2021-01-01T00:00:00Z https://hdl.handle.net/2123/24900 Lead Essay: Conflicts of interest: opening up new territories Wiersma, Miriam; Lipworth, W; Komesaroff, Paul; Kerridge, I Over the last few decades, awareness of the importance of managing conflicts of interest among health-related policymaking, professional, research, and clinical institutions has greatly increased. The visibility of the issue—and the widespread use of the expression “conflict of interests”—may give the impression that the underlying concepts have been clearly defined and that there is widespread consensus about processes and practices. Sadly, this is not the case. In reality, conflicts of interests are far more complex than is commonly appreciated and, because of their importance, require ongoing detailed, rigorous analysis and debate. 2020-01-01T00:00:00Z https://hdl.handle.net/2123/24897 An ethical critique of person-centred healthcare Arnold, M; Kerridge, I; Lipworth, W This paper explores the counterfactual aspects of Person-Centred Healthcare (PCH). PCH as promoted appears to have self-evident value as an expression of humanism in medical care, but this can be deceptive. Despite its rhetorical appeal, there is limited evidence that it improves either the experience or outcomes of healthcare. More problematically, it is commonly overlooked that the philosophical assumptions upon which PCH rests carry with them other, more malign ideologies and healthcare movements such as preference-driven healthcare, extreme libertarianism and consumerism. This – as distinct from promoting humanism - has the effect of creating perverse clinical incentives that are driven by patient preferences, while simultaneously constraining these same patients’ autonomy within an economically rationalised neoliberal system of healthcare. It also works against consideration of social interests and the values privileged by communities. None of this is an argument against promoting humanism in medicine and taking seriously patients’ lived experiences; rather it is a call for a more critical approach to the bioethics of PCH - one aware of the economics and politics of healthcare. 2020-01-01T00:00:00Z https://hdl.handle.net/2123/24308 Beyond duty: Medical “heroes” and the Covid-19 pandemic Lipworth, W When infectious disease outbreaks strike, health facilities acquire labels such as “war zones” and “battlefields” and healthcare professionals become “heroes” on the “front line.” But unlike soldiers, healthcare professionals often take on these dangerous roles without any prior intention or explicit expectation that their work will place them in grave personal danger. This inevitably raises questions about their role-related obligations and whether they should be free to choose not to endanger themselves. In this article, I argue that it is helpful to view this situation not only through the lens of “professional duty” but also through the lens of “role-related conflicts.” Doing so has the advantage of avoiding exceptionalism and allowing us to draw lessons not only from previous epidemics but also from a wide range of far more common role-related dilemmas in healthcare. 2020-01-01T00:00:00Z https://hdl.handle.net/2123/24283 Conflicts of interest: opening up new territories. Wiersma, Miriam; Lipworth, W; Komesaroff, Paul; Kerridge, Ian Over the last few decades, awareness of the importance of managing conflicts of interest among health-related policymaking, professional, research, and clinical institutions has greatly increased. The visibility of the issue—and the widespread use of the expression “conflict of interests”—may give the impression that the underlying concepts have been clearly defined and that there is widespread consensus about processes and practices. Sadly, this is not the case. In reality, conflicts of interests are far more complex than is commonly appreciated and, because of their importance, require ongoing detailed, rigorous analysis and debate. 2020-01-01T00:00:00Z https://hdl.handle.net/2123/24282 Biobank networking and globalisation: perspectives and practices of Australian biobanks Light, E; Wiersma, M; Dive, Lisa; Kerridge, I; Lipworth, W; Stewart, Cameron; Kowal, Emma; Marlton, Paula; Critchley, Christine Objective This study examined the practices and attitudes of Australian biobanks regarding access to samples and data, as well as local and global networking with other biobanks. Methods This was a mixed-methods study, including an online survey of Australian biobank administrators and qualitative interviews with survey participants. The survey examined the criteria applied when considering requests to share or network. The interviews explored attitudes and practices regarding sharing and networking. Results Most (90.9%; 30/33) biobanks offered access to their samples and data to others, principally for research (90.6%; 29/32). The most common criteria used to evaluate access requests included ethical oversight (84.8%; 28/33), scientific merit (84.8%; 28/33) and intended use (81.8%; 27/33). Just over two-thirds (69.7%; 23/33) of biobanks participated in Australian networks, and 39.1% (9/23) participated in global networks. Networking took the form of both sharing standardised operating procedures and policies (60.9%) and sharing samples and data (43.5%). Thirteen of the 16 interviewees participated in networks. Motivations for sharing included scientific necessity, sharing expertise and standardising operations and governance. Significant barriers to networking remain, including insufficient resources, inconsistent regulations and procedures, and cultural and political issues to do with the conduct of research. Conclusions Many Australian biobanks are already active participants in various types of global biobanking. If biobanks are to expand and make the most of their involvement in global networks, then important barriers need to be overcome. 2020-01-01T00:00:00Z https://hdl.handle.net/2123/24281 Public trust and global biobank networks Dive, Lisa; Critchley, Christine; Otlowski, Margaret; Mason, Paul; Wiersma, Miriam; Light, Edwina; Stewart, Cameron; Kerridge, I; Lipworth, W Biobanks provide an important foundation for genomic and personalised medicine. In order to enhance their scientific power and scope, they are increasingly becoming part of national or international networks. Public trust is essential in fostering public engagement, encouraging donation to, and facilitating public funding for biobanks. Globalisation and networking of biobanking may challenge this trust. We report the results of an Australian study examining public attitudes to the networking and globalisation of biobanks. The study used quantitative and qualitative methods in conjunction with bioethical analysis in order to determine factors that may contribute to, and threaten, trust. Our results indicate a generally high level of trust in biobanks and in medical research more broadly. Key factors that can reduce perceived trustworthiness of biobanks are commercialisation and involvement in global networking. We conclude that robust ethical oversight and governance standards can both promote trust in global biobanking and ensure that this trust is warranted. 2020-01-01T00:00:00Z https://hdl.handle.net/2123/24280 Promoting ethics across the healthcare sector: what can codes achieve? Lipworth, W; Kerridge, I; Montgomery, Kathleen; Komesaroff, Paul A. Over the course of the twentieth century, numerous national and international ethics “codes” have been developed. While such codes serve important substantive and symbolic functions, they can also pose challenges. In this article, we discuss these challenges, noting that they fall into four main categories relating to conceptual tensions, power imbalances, organisational barriers, and threats of exploitation. We illustrate these challenges using examples provided from the UNESCO Universal Declaration on Bioethics and Human Rights (UDBHR). We emphasise the importance of accountability in the development and maintenance of national and international codes and argue that, despite all their challenges, codes provide an important common language among otherwise disparate and sometimes adversarial groups, and provide visible and explicit sets of standards that may be invoked by community members to criticise and hold powerful bodies to account. This is particularly important for practitioners and researchers who belong to organisations that are signatories to codes, who can use these codes to both guide and justify ethical behaviour in the face of competing organisational, professional and political imperatives. 2020-01-01T00:00:00Z https://hdl.handle.net/2123/24259 Women in contact with the Sydney LGBTIQ communities: Report of the SWASH Lesbian, Bisexual and Queer Women’s Health Survey 2016, 2018, 2020 Mooney-Somers, Julie; Deacon, Rachel; Anderst, Ania; Rybak, Luna; Akbany, Afreen; Philios, Luka; Keeffe, Sophie; Price, Karen; Parkhill, Nicolas A lack of systematic, nuanced research on the health and wellbeing of Australian lesbian, bisexual and queer (LBQ) women (cis and trans) has been a significant barrier to understanding, recognising and addressing their health needs. A range of social, psychological and economic factors mean that this group has poorer health outcomes than their heterosexual peers. Stigma, family and community rejection, and discrimination towards LBQ women can impact on health and wellbeing, the delivery of health services, and their access to services. The inclusion of lesbian and bisexual women in the 2018 National Women’s Health Strategy1 and the 2018 NSW Women’s Strategy2 is recognition that while LBQ women share many health challenges with heterosexual women, some health problems may be more prevalent, risk factors may be different, and interventions may need to be tailored to the needs of this group. In NSW, the development of an LGBTI Health Strategy (due to be released in 2021) is an acknowledgment that health care systems need to consider how they provide health care to these populations to ensure equity of access and outcomes. The SWASH survey is a comprehensive survey of important health issues relevant to lesbian, bisexual, queer and other non-heterosexual identifying women engaged with Sydney’s lesbian, gay, bisexual, transgender, intersex and queer (LGBTIQ) communities. SWASH has been run by researchers in collaboration with ACON every two years since 1996, and since 2009 has been run by researchers at the University of Sydney. The survey is regularly revised to reflect the needs of LGBTIQ communities and knowledge deficits identified through research literature. Where possible, questions are sourced from established national surveys. Australian epidemiological data on the health and wellbeing of LBQ women remains limited. Sexuality and gender indicators are seldom included in large epidemiological surveys. Even when they are, data is often reported only by sexuality (e.g. LGB people vs heterosexual people) and not by sexuality and gender (e.g. LBQ women, GBQ men, heterosexual women, heterosexual men). SWASH provides a much-needed local evidence base to inform policy and best practice in healthcare and prevention for chronic diseases, mental health and wellbeing, sexual and reproductive health, and ageing. This report presents results from the three most recent iterations of the survey conducted at the Mardi Gras Fair Day and other community events and venues during the Sydney Gay and Lesbian Mardi Gras seasons in 2016, 2018 and 2020. In 2020, 1588 lesbian, bisexual, queer and other non-heterosexually identifying women (cis and trans) and non-binary people returned valid surveys; an unprecedented number in the 24-year history of the SWASH survey. This data provides unparalleled insights into the health of lesbian, bisexual, queer and other non-heterosexual identifying women aged 16 to 71 years who engaged with LGBTIQ communities in and around Sydney (where 85% of respondents reside). Our analyses highlight several areas of particular concern – many of which have persisted over time – where mainstream preventive health interventions that are inclusive of, or targeted to, LBQ women are needed. 2020-01-01T00:00:00Z https://hdl.handle.net/2123/23626 Obligations and preferences in knowing and not knowing: the importance of context Dive, Lisa; Newson, A.J. Commentary on Davies: "The right not to know and the obligation to know" 2020-01-01T00:00:00Z https://hdl.handle.net/2123/23627 Ethical issues in reproductive genetic carrier screening Dive, Lisa; Newson, A.J. Reproductive Carrier Screening (RCS) involves testing individuals or couples to determine their likelihood of having a child with certain inherited genetic conditions. RCS raises ethical considerations, including: the acceptable goals of screening, how to choose the genes to test for, ensuring recipients make choices consistent with their preferences, reporting results, funding models, and ensuring that RCS programs reflect community values. The Australian Reproductive Genetic Carrier Screening Project (ARGCSP; ‘Mackenzie’s Mission’) is a research project investigating how RCS could be provided nationally in future. In this paper we outline the ethical issues in RCS as relevant to initiatives like the ARGCSP. 2020-01-01T00:00:00Z https://hdl.handle.net/2123/22730 Health Professionals “Make Their Choice”: Pharmaceutical Industry Leaders’ Understandings of Conflict of Interest Grundy, Q; Tierney, L; Mayes, C; Lipworth, W Conflicts of interest, stemming from relationships between health professionals and the pharmaceutical industry, remain a highly divisive and inflammatory issue in healthcare. Given that most jurisdictions rely on industry to self-regulate with respect to its interactions with health professionals, it is surprising that little research has explored industry leaders’ understandings of conflicts of interest. Drawing from in-depth interviews with ten pharmaceutical industry leaders based in Australia, we explore the normalized and structural management of conflicts of interest within pharmaceutical companies. We contrast this with participants’ unanimous belief that the antidote to conflicts of interest with health professionals were “informed consumers.” It is, thus, unlikely that a self-regulatory approach will be successful in ensuring ethical interactions with health professionals. However, the pharmaceutical industry’s routine and accepted practices for disclosing and managing employees’ conflicts of interest could, paradoxically, serve as an excellent model for healthcare. 2017-01-01T00:00:00Z https://hdl.handle.net/2123/22729 Are my religious beliefs anyone’s business? A framework for declarations in health and biomedicine Ghinea, N; Wiersma, M; Kerridge, I; Lipworth, W Conflicts of interests (COIs) are typically divided into those that are financial and those that not. While there is general agreement that financial COIs have a significant impact on decisions and need to be declared and managed, the status of non-financial COIs continues to be disputed. In a recent BMJ feature article it was proposed that religious beliefs should be routinely declared as an interest. The article generated over 41 responses from the medical community and health researchers, which put forward diverse and opposing views. In this paper we analyse the discourse to shed further light on the reasons put forward for and against declaring religious beliefs. We argue for a middle path in which only material beliefs should be declared, and then only when there are no extenuating circumstances. To this end, we present a framework to help evaluate the materiality of interests that can be used for both financial and non-financial interests. 2020-01-01T00:00:00Z https://hdl.handle.net/2123/22733 Unconventional Practice, “Innovative” Interventions and the National Law Stewart, C; Kerridge, I; Waldby, C; Lipworth, W; Munsie, M; Lysaght, T; Rudge, C; Ghinea, N; Eckstein, L; Neilsen, J; Kaldor, J; Nicol, D This column explores a recent health profession disciplinary case which throws light on the problems of unconventional interventions by medical practitioners under the Health Practitioner Regulation National Law Act 2009 (Qld). The case involved “innovative” practices which were later found to have been scientifically unsupported, dangerous to patients and grounds for cancelling the health practitioner’s registration. The article looks at common features of these kinds of cases in Australia and then examines recent attempts by the Medical Board of Australia to draft policy guidance around the use of unconventional practice in medicine. The article concludes with a number of changes to improve the effectiveness of the proposed policy. 2020-01-01T00:00:00Z https://hdl.handle.net/2123/22822 The direct-to-consumer market for stem cell-based interventions in Australia: Exploring the experiences of patients Special Report Waldby, C; Hendl, T; Kerridge, I; Lipworth, W; Lysaght, T; Munsie, M; Stewart, C The prevalence of businesses selling autologous stem cell-based interventions (ASCBI) to patients in Australia has raised serious concerns about how weaknesses in regulation have enabled the emergence of an industry that engages in aggressive marketing of unproven treatments to patients. Little is known about how patients experience this marketing and their subsequent interactions with practitioners. This paper reports results from fifteen semi-structured interviews with patients and carers, and also draws upon discussion conducted with patients, carers and family members (22 participants) in a workshop setting. We explore how Australian patients and carers understand and experience these interventions, and how their presumptions about the ethics of medical practice, and the regulatory environment in Australia have conditioned their preparedness to undergo unproven treatments 2020-01-01T00:00:00Z https://hdl.handle.net/2123/22823 Transvaginal mesh, gender, and the ethics of clinical innovation Wiersma, M; Kerridge, I; Lipworth, W On the 10th of October 2018, Australian Health Minister Greg Hunt issued a national apology to the Australian women who experienced “horrific outcomes” following surgery using transvaginal mesh—acknowledging the “historic agony and pain that has come from mesh implantation”. This apology followed many decades of “innovative” use of transvaginal mesh for the treatment of pelvic organ prolapse. We use the case of transvaginal mesh to explore how clinical innovation may not only harm patients, but also entrench vulnerability and exacerbate existing inequities—in this case, those relating to gender. 2020-01-01T00:00:00Z https://hdl.handle.net/2123/22728 Does consumer engagement in health technology assessment enhance or undermine equity? Ghinea, N; Lipworth, W; Kerridge, I Consumer engagement in decisions about the funding of medicines is often framed as a good in and of itself, and as an activity that should be universally encouraged. A common justification for calls for consumer engagement is that it enhances equity. In this paper we systematically critique this assumption. We show that consumer engagement may undermine equity as well as enhance it, and show that a simple relationship cannot be assumed but must be justified and demonstrated. In concluding we present a number of challenges that need to be overcome in order for consumer engagement to contribute to health technology assessment in a morally and politically sound manner. 2020-01-01T00:00:00Z https://hdl.handle.net/2123/22732 A major new alliance in Australian healthcare: the Australian consensus framework for ethical collaboration in the healthcare sector Lipworth, W; Fitzpatrick, J; Cosenza, A; Kerridge, I; Subramanian, P; Verhoeven, A; Wells, L The “Australian Consensus Framework for Ethical Collaboration in the Healthcare Sector” (ACF) is an Australian initiative aimed at countering dysfunction and growing mistrust in the health sector through the development of a cross-sectoral consensus framework. The development of this framework arose from Australia’s involvement in the Asia Pacific Economic Cooperative (APEC) and has since become the largest of its kind internationally, with over 70 signatories representing professional bodies, industry organisations, hospital and health services associations, regulators, and patient and advocacy groups. In this article, we describe and critique the framework and outline its implementation. 2020-01-01T00:00:00Z https://hdl.handle.net/2123/22731 Against the use and publication of contemporary unethical research: the case of Chinese transplant research Higgins, W; Rogers, W; Ballantyne, A; Lipworth, W Recent calls for retraction of a large body of Chinese transplant research and of Dr. Jiankui He’ gene editing research has led to renewed interest in the question of publication, retraction and use of unethical biomedical research. In Part 1 of this paper, we briefly review the now well-established consequentialist and deontological arguments for and against the use of unethical research. We argue that, while there are potentially compelling justifications for use under some circumstances, these justifications fail when unethical practices are ongoing—as in the case of research involving transplantations in which organs have been procured unethically from executed prisoners. Use of such research not only displays a lack of respect and concern for the victims but also undermines efforts to deter unethical practices. Such use also creates moral taint and renders those who use the research complicit in continuing harm. In Part 2, we distinguish three dimensions of “non-use” of unethical research: non-use of published unethical research, non-publication, and retraction and argue that all three types of non-use should be upheld in the case of Chinese transplant research. Publishers have responsibilities to not publish contemporary unethical biomedical research, and where this has occurred, to retract publications. Failure to retract the papers implicitly condones the research, while uptake of the research through citations rewards researchers and ongoing circulation of the data in the literature facilitates subsequent use by researchers, policymakers and clinicians. 2020-01-01T00:00:00Z https://hdl.handle.net/2123/22723 Beyond flourishing: Intersecting uses and interests in the neurotechnology marketplace Forlini, C; Lipworth, W; Carter, A; Kerridge, I 2019-01-01T00:00:00Z https://hdl.handle.net/2123/22048 “Some sort of fantasy land”: a qualitative investigation of appropriate prescribing in oncology. Ghinea, N; Wiersma, M; Kerridge, I; Olver, I; Pearson, S; Day, R; Liauw, W; Lipworth, W Increasing the appropriateness of prescribing has long been a focus of government, non-government and professional organisations. Progress towards this is made difficult by the fact appropriate prescribing remains inconsistently defined and is the subject of ongoing intense disagreement. In this study we attempted to understand why this is the case in oncology through the qualitative analysis of semi-structured interviews with 16 Australian oncologists and haematologists. We found that oncologists framed appropriate prescribing in terms of the following inter-related, and at times opposed, values: civic mindedness; hope and compassion; realism; and virtue in motivation. These values cannot be ranked a priori, and therefore what is meant by appropriate prescribing depends upon both the strength of arguments used to justify particular definitions, and the values and goals of affected communities. 2019-09-12T00:00:00Z https://hdl.handle.net/2123/22043 Formulating an Ethics of Pharmaceutical Disinvestment Pace, J; Laba, T; Nisingizwe, M; Lipworth, W There is growing interest among pharmaceutical policymakers in how to “disinvest” from subsidised medicines. This is due to both the rapidly rising costs of healthcare and the increasing use of accelerated and conditional reimbursement pathways which mean that medicines are being subsidised on the basis of less robust evidence of safety and efficacy. It is crucial that disinvestment decisions are morally sound and socially legitimate, but there is currently no framework to facilitate this. We therefore reviewed the bioethics literature in order to identify ethical principles and concepts that might be relevant to pharmaceutical disinvestment decisions. This revealed a number of key ethical considerations—both procedural and substantive—that need to be considered when making pharmaceutical disinvestment decisions. These principles do not, however, provide practical guidance so we present a framework outlining how they might be applied to different types of disinvestment decisions. We also argue that, in this context, even the most rigorous ethical reasoning is likely to be overridden by moral intuitions and psychological biases and that disinvestment decisions will need to strike the right balance between respecting justifiable moral intuitions and overriding unjustifiable psychological impulses. 2020-03-03T00:00:00Z https://hdl.handle.net/2123/22049 Status, respect and stigma: a qualitative study of non-financial interests in medicine Wiersma, M; Kerridge, I; Lipworth, W Conflicts of interest (COI) in health and medicine have been the source of considerable public and professional debate. Much of this debate has focused on financial, rather than non-financial COI, which is a significant lacuna because non-financial COI can be just as influential as financial COI. In an effort to explore the nature and effects of non-financial, as well as financial COI, we conducted semi-structured interviews with 11 Australian medical professionals regarding their experiences of, and attitudes towards, COI. We found that this group of medical professionals saw non-financial interests—most notably the pursuit of status and respect, and the avoidance of stigma—as potentially conflicting with other important interests (such as patient care). 2020-03-11T00:00:00Z https://hdl.handle.net/2123/21727 Disruption, Diversity, and Global Biobanking Light, E; Wiersma, M; Dive, Lisa; Kerridge, I; Critchley, C; Lipworth, W Beskow and Weinfurt’s analysis of biobank consent comprehension draws attention to important epistemic and axiological questions, not the least of which concern how we can know what are the right or wrong ways to conduct contemporary biobank research. Their empirical work highlights uncertainty and dissonance among stakeholders about what immutable values should underpin biobank consent practices, as well as the differences between what experts can expect to occur and what will happen when consent and other agreed processes are put into action. These questions become potentially more complex as biobanks continue to network globally, and the moral, social, legal and political connections among and between prospective participants, researchers and regulators are disrupted. The initial findings of our Australian research of the global networking of biobanks (in progress) suggest that factors other than models of consent can be as, or more, important to people’s trust and engagement with global biobanking. Similar to Beskow and Weinfurt’s study, these perspectives exhort us to ensure that current efforts toward global harmonization of biobanking regulatory frameworks are informed by diverse perspectives garnered from both theoretical and empirical methods. 2019-05-08T00:00:00Z https://hdl.handle.net/2123/21675 Guidelines for ethical relationships between health professionals and industry Komesaroff, P; Kerridge, I; Lipworth, W; Jureidini, J; Loblay, R; Gruen, R; Harvey, K; Malpas, P; Stewart, C; Kilham, H; Clarke, C; Carney, S; Rogers, W; Greenberg, P 2018-08-01T00:00:00Z https://hdl.handle.net/2123/21659 Social and Ethical Implications of Precision Medicine Lipworth, W; Kerridge, I; Nicol, D; Otlowski, M Precision medicine has significant potential to improve the lives of both individuals and populations, but targeted therapies can be expensive, have serious adverse effects and are not always as effective as hoped. It is crucial, therefore, that the “right” targeted therapies are developed, and that these are tested, regulated, funded and used in practice in the “right” ways. It is not always easy, however, to determine what is right because precision medicine affects, and is shaped by, many different stakeholder groups—including patients, clinicians, government and industry—each of which has its own, often strongly held and competing, concerns and commitments. These, in turn, determine what they consider to be good and right. In each case, these perspectives are underpinned by values such as autonomy (which in this context usually refers to self-­determination), beneficence (doing good), non-­maleficence (not causing harm), justice, solidarity, and integrity. People also value the pursuit of knowledge and the social benefits that derive from scientific inquiry. In this chapter, the ethical issues raised by precision medicine are summarised with reference to such values and ideas. The aim is not to fully articulate stakeholders’ perspectives or to provide answers to ethical dilemmas, but rather to map the moral territory of precision medicine. This chapter focuses on the ethics of the development, regulation and funding, and clinical use of “targeted therapies” developed using genomic technologies. 2017-01-01T00:00:00Z https://hdl.handle.net/2123/21658 An Ethical Framework for Funding Rare Disease Therapies Lipworth, W 2014-01-01T00:00:00Z https://hdl.handle.net/2123/21655 Is it ethical to prescribe paracetamol for acute low back pain and osteoarthritis? Day, RO; Cohen, M; Coleshill, MJ; Ghinea, N; Lipworth, W; Maher, CG; Latimer, J; Lin, CWC; McLachlan, AJ Despite accumulating evidence indicating that paracetamol is no more efficacious than placebo for acute uncomplicated low back pain and symptomatic osteoarthritis, it is still prescribed for these conditions. This is likely due to perceived clinical improvement in pain observed when the medicine is taken and the known harms associated with pharmacological alternatives. The benefits observed in the majority of patients are, however, likely to be placebo effects. This scenario poses an ethical dilemma between respecting patient autonomy by providing complete information while also promoting clinical benefit (beneficence). This article discusses this situation and considers a framework in which paracetamol might continue to be prescribed for these conditions in an ethical manner, namely through discussing the evidence and the benefit that some patients experience from it. 2019-01-01T00:00:00Z https://hdl.handle.net/2123/21656 Medical Ethics Lipworth, W; Strong, K; Kerridge, I Broadly speaking, ethics is concerned with the wellbeing of individuals and societies and asks questions about what we ought to do. “Practical ethics” or “applied ethics” considers this in specific contexts, such as medicine, government, law enforcement and business. “Bioethics” is one type of practical ethics. Bioethics refers to the ethics of the biological sciences and includes medical ethics, nursing ethics, pharmacy/pharmaceutical ethics, research ethics, psychological ethics, public health ethics and research ethics. Broad conceptions of bioethics also include environmental ethics and the ethics of veterinary practice. This chapter focuses on the key issues that emerge in the context of clinical medical practice (“medical ethics”) and on the frameworks that one might use to resolve these issues. 2012-01-01T00:00:00Z https://hdl.handle.net/2123/21657 Applying the Theoretical Domains Framework to identify barriers and targeted interventions to enhance nurses’ use of electronic medication management systems in two Australian hospitals Debono, D; Taylor, N; Lipworth, W; Greenfield, D; Travaglia, J; Black, D; Braithwaite, J Background Medication errors harm hospitalised patients and increase health care costs. Electronic Medication Management Systems (EMMS) have been shown to reduce medication errors. However, nurses do not always use EMMS as intended, largely because implementation of such patient safety strategies requires clinicians to change their existing practices, routines and behaviour. This study uses the Theoretical Domains Framework (TDF) to identify barriers and targeted interventions to enhance nurses’ appropriate use of EMMS in two Australian hospitals. Methods This qualitative study draws on in-depth interviews with 19 acute care nurses who used EMMS. A convenience sampling approach was used. Nurses working on the study units (N = 6) in two hospitals were invited to participate if available during the data collection period. Interviews inductively explored nurses’ experiences of using EMMS (step 1). Data were analysed using the TDF to identify theory-derived barriers to nurses’ appropriate use of EMMS (step 2). Relevant behaviour change techniques (BCTs) were identified to overcome key barriers to using EMMS (step 3) followed by the identification of potential literature-informed targeted intervention strategies to operationalise the identified BCTs (step 4). Results Barriers to nurses’ use of EMMS in acute care were represented by nine domains of the TDF. Two closely linked domains emerged as major barriers to EMMS use: Environmental Context and Resources (availability and properties of computers on wheels (COWs); technology characteristics; specific contexts; competing demands and time pressure) and Social/Professional Role and Identity (conflict between using EMMS appropriately and executing behaviours critical to nurses’ professional role and identity). The study identified three potential BCTs to address the Environmental Context and Resources domain barrier: adding objects to the environment; restructuring the physical environment; and prompts and cues. Seven BCTs to address Social/Professional Role and Identity were identified: social process of encouragement; pressure or support; information about others’ approval; incompatible beliefs; identification of self as role model; framing/reframing; social comparison; and demonstration of behaviour. It proposes several targeted interventions to deliver these BCTs. Conclusions The TDF provides a useful approach to identify barriers to nurses’ prescribed use of EMMS, and can inform the design of targeted theory-based interventions to improve EMMS implementation. 2017-01-01T00:00:00Z https://hdl.handle.net/2123/21265 Real-world Data to Generate Evidence About Healthcare Interventions Lipworth, W 2019-01-01T00:00:00Z https://hdl.handle.net/2123/21266 An Ethics Framework for Big Data in Health and Research Xafis, V; Schaefer, GO; Labude, MK; Brassington, I; Ballantyne, A; Lim, HY; Lipworth, W; Lysaght, T; Stewart, C; Sun, S; Laurie, GT; Tai, ES 2019-01-01T00:00:00Z https://hdl.handle.net/2123/20723 Hitting the white ceiling: Structural racism and Aboriginal and Torres Strait Islander university graduates Plater, S; Mooney-Somers, Julie; Barclay, Lesley; Boulton, John This article reports on a study that explored what it means to be a mature-age Aboriginal and Torres Strait Islander university graduate in the context of age, life-stage, history, culture, socioeconomic status, race and place. Using narrative interview data and fieldwork observation, we focus on the graduates’ workplace experiences and take a case study approach to amplify their voices. We argue that the data challenges the ideological construct of Australia as a ‘post-racial’ society and illustrates how interrelated variants of structural racism function to sanction, silence and control educated Aboriginal and Torres Strait Islander people, divide communities into quasi-hierarchies and sustain white power and privilege. We show how these variants are expressed as low expectations, shadeism, culturism and privilege protectionism, and argue that their enactment can erect an invisible barrier to Aboriginal and Torres Strait Islander professional progression: a ‘white ceiling’ above which many graduates struggle to ascend. 2019-01-01T00:00:00Z https://hdl.handle.net/2123/20531 Conflicts of interest: new thinking, new processes Komesaroff, P; Kerridge, I; Lipworth, W 2019-01-01T00:00:00Z https://hdl.handle.net/2123/20421 Mistreatment in Australian medical education: a student-led scoping of experiences Szubert, A.-K; Gibberd, A.; Buisson, E.; Hooker, C; Ivory, K. Background: Evidence of bullying and harassment of medical students and junior doctors has existed for over 30 years. However, there has been little attempt to explore the dimensions of this issue in Australia to date. Given the evidence which indicates that experiencing abusive behaviour has a detrimental effect on professional identity formation and on mental health, the Australian Medical Students’ Association (AMSA) undertook a national scoping study to better understand the experiences of Australian medical students. Methods: We conducted a mixed methods survey of the 16,959 students enrolled in a medical degree at an Australian university in 2015. An anonymous, voluntary online questionnaire was distributed through AMSA’s social media, email newsletter and website, and medical students’ societies. Results: We received 519 responses, including 194 (37%) detailing at least one incident of bullying or harassment. 335 (65%) survey respondents were women and 345 (67%) were in the clinical years of their training. 60% of all respondents reported experiencing or witnessing mistreatment during their medical education. The most common theme in the free text was belittlement of the student’s competence and capacity to be a good doctor. Some gave details about how universities failed to prevent or appropriately respond to students’ experiences of bullying and harassment. Conclusion: In line with international data, this study shows that many Australian medical students perceive mistreatment as an important problem that is not always managed well by faculties. Multi-pronged policy and practice responses are needed to instigate cultural change in Australian medical education. 2018-04-15T00:00:00Z https://hdl.handle.net/2123/20206 “I see it everywhere...” young people’s exposure to sexual content in social media: a qualitative study of Australian adolescents’ social media use Lewis, Larissa; Mooney-Somers, Julie; Guy, Rebecca; Watchirs-Smith, Lucy; Skinner, S. Rachel Background: Surveys suggest over 40% of young people 13-16 years have seen some form of sexual content online in the past 12 months. There is little research exploring the pathways through which exposure occurs or descriptions of such content. While there is much public concern regarding exposure to sexual content, Australian students receive little or no education on mitigating the impact of sexual content online. Methods: We conducted focus groups with high school students in an aim to discover young people’s experience of exposure to sexual content in social media. In this paper we describe these pathways to sexual content exposure, the nature of the sexual content young people are exposed to and their views about this exposure. Results: Focus groups found that exposure to sexual content through social media occurred through networks of ‘friends’ or followers, or paid-for advertising. Content ranged from subtle messages/photos to explicit pornographic pictures/videos. Young people described much of their exposure was unwanted. Conclusions: Exposure to sexual content, no matter the scope and intensity, is almost unavoidable among young people who use social media. Utilising this information to educate young people on mitigating the impact of sexual content, rather than trying to prevent young people from viewing it, could be a more effective approach. 2019-03-26T00:00:00Z https://hdl.handle.net/2123/20207 Changes in social networks are associated with lesbian, bisexual and queer women quitting smoking: an analysis of Australian survey data Kolstee, Johann; Deacon, Rachel M; Haidar, Samar; Gray, James; Mooney-Somers, Julie Introduction & Aims: Lesbian, bisexual and queer (LBQ) women in Australia and internationally are smoking at least twice the rate of women in the general population. An understanding of smoking behaviours in this population is essential in order to develop effective interventions. Our analysis aimed to investigate differences in smoking patterns and contexts of smoking between current smokers and recent quitters (<2 years to 1 month). Design & Methods: Data were collected through an online anonymous survey conducted in mid-2015. Participants were recruited online from a variety of social networking sites and community based mailing groups. Results: Overall 257 LBQ women completed the survey, 73% current smokers and 27% recent quitters; nearly all had smoked daily at some point in their lives. Multivariate analysis showed recent quitters were less likely to have some (aOR 0.19, 95% CI 0.05-0.71) or half/most/all (aOR 0.12, 95% CI 0.03-0.048) close friends who smoked compared to none, and were more likely to have a non-smoking (aOR 10.2, 95% CI 3.86-27.0) or no regular partner (aOR 4.01, 95% CI 1.47-10.9) than one who smoked. Non-Anglo-Australian women were also more likely to be recent quitters (aOR 2.45 (95% CI 1.10-5.42)) than Anglo-Australian women. Discussion & Conclusions: Understanding the social significance of partners and friends in LBQ women’s smoking and cessation efforts will be important for developing meaningful, effective and targeted interventions to address the persistent high rates of smoking in this population. 2019-03-26T00:00:00Z