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This section explores the challenges involved in translating genomic research into genomic medicine. A number of priorities have been identified in the Australian National Health Genomics Framework for addressing these challenges. Responsible collection, storage, use and management of genomic data is one of these priorities, and is the primary theme of this section. The recent release of Genomical, an Australian data-sharing platform, is used as a case study to illustrate the type of assistance that can be provided to the health care sector in addressing this priority. The section first describes the National Framework and other drivers involved in the move towards genomic medicine. The section then examines key ethical, legal and social factors at play in genomics, with particular focus on privacy and consent. Finally, the section examines how Genomical is being used to help ensure that the move towards genomic medicine is ethically, legally and socially sound and that it optimises advances in both genomic and information technology. [ABSTRACT FROM AUTHOR]

Sexual assault is a global problem, with the risk highest among university students. Bystander intervention preventing sexual assaults has primarily been researched using quantitative methods to understand what factors influence it. However, both sexual assault and bystander intervention are complex with many subtle and overlapping issues that, when analyzed qualitatively, can offer new insights. The current study aimed to explore and develop a nuanced and comprehensive understanding of students' perceptions of sexual assault and bystander intervention across two universities, one in the United Kingdom and one in Australia. Thirty-nine university students (19 in the United Kingdom; 20 in Australia) took part in one-to-one semistructured interviews. Using inductive thematic analysis, two overarching themes were identified: (a) navigating the complex dynamics of sexual assault; and (b) decisions to intervene or not to intervene. Findings suggest that the complexity and ambiguity around sexual assault can forestall bystander intervention. As such, increasing education, awareness, and discussions around sexual assault and bystander intervention is vital to increase awareness of the problem and mobilize action from bystanders to prevent sexual assault. [ABSTRACT FROM AUTHOR]

A stand-alone strangulation offence was introduced in Queensland, Australia in 2016. One of the elements of the Queensland strangulation offence is that the victim did not consent to the strangulation. This paper reviews the harms and dangers associated with strangulation before overviewing the debates about the use of strangulation during sex. Drawing on focus group discussions conducted with domestic violence support workers and men's behaviour change workers, we discuss four overlapping themes identified in the discussions. These were perceptions that: strangulation during sex is normalised; consent is not informed; it happens in the context of coercive control; and the requirement of consent opens a loophole in the strangulation offence. Considering the issues raised, and the clear risks and harms, we suggest that consideration should be given to whether it is ever possible to consent to strangulation and we consider possible reforms such as following the two-tiered approaches to consent used in the England and Wales law and elsewhere in Australia. We also conclude that law reforms such as these are partial solutions and there is significant need for more community education about the risks and harms of strangulation. [ABSTRACT FROM AUTHOR]

Context: In vitro fertilisation (IVF) is now a common assisted reproductive technology (ART) procedure globally, with 8 million children alive today having been conceived utilising IVF. For many patients, IVF is a difficult experience with many discontinuing treatment because of emotional, relationship and financial stress, or intolerable physical side effects of hormone treatments. Design and Participants: A qualitative study, in which 31 professionals and 25 patients from the ART sector in Australia were interviewed. The interviews were analysed using codebook thematic analysis. Results: Our data indicates there are 'silences' within the therapeutic relationship of IVF, which may limit the capacity for patients to prepare emotionally, financially, or medically for the procedure, and may contribute to psychological distress and dissatisfaction with care. These 'silences' include what the patient 'is not told' by their clinician or 'does not hear' and what the patient feels they 'cannot say'. Discussion: Drawing upon the work of Jay Katz, Charis Thompson, and Miles Little on 'silences' and performance in clinical practice, we argue that although IVF is a complex and multifaceted procedure that is often conducted in a commercial setting, the clinical and therapeutic relationship between doctor and patient remains pivotal to the experiences of patients. The 'silences' within this relationship may impact negatively on decision‐making, and on the delivery and experience of care. Conclusions: Careful attention to the realities of IVF treatment in the clinic room (and awareness of the performances that hide them) should allow for more present and compassionate care. Such care may leave patients more satisfied with their experience and their choices, regardless of treatment outcomes. Patient or Public Contribution: This article draws on interviews with patients who had undergone or were currently undergoing IVF, as well as a range of representatives from the ART community (including reproductive medicine specialists, general practitioners, fertility nurses, counsellors, administrators in ART businesses and embryologists). [ABSTRACT FROM AUTHOR]

A gynaecological ultrasound on an adolescent patient can involve a transabdominal (TAUS), transvaginal (TVUS), trans‐perineal (TPUS) or transrectal (TRUS) approach. Following TAUS a TVUS or TRUS may be suitable on an adolescent patient if they are determined to be a 'mature minor'/Gillick competent and provide informed consent. Legal information on adolescent consent to medical treatment is difficult for sonographers to obtain as current professional guidelines are not sufficiently detailed on the laws of consent to medical treatment and workplace policies are often not specific to adolescent patients. This manuscript provides information on informed consent to medical treatment, 'mature minor'/Gillick competence determination, Australian and New Zealand legislation for 'mature minors' to consent to medical treatment, adolescent psychology and avoiding coercion when obtaining consent. [ABSTRACT FROM AUTHOR]

Introduction: In 2018, following government policy changes to Australia's national electronic health record system, 'My Health Record', consumer advocates—including organisations representing people living with HIV, people who use drugs and sex workers—raised concerns about privacy and data security. Responding to these controversies, this study explores the practical, ethical and political complexities of engaging stigmatised communities with digital health systems. Methods: We conducted 16 qualitative semi-structured interviews in 2020 with key informants representing communities who experience stigma, discrimination and marginalisation in Australia. These communities included people living with HIV, sex workers, people who inject drugs, gay and bisexual men and transgender and gender diverse people. We conducted a reflexive thematic analysis. Results: Key informants were sceptical of proposed benefits of electronic health records for their communities, and concerned about privacy risks and the potential for discrimination. Meaningful consultation, consent mechanisms and tackling structural stigma were raised as solutions for engaging communities. Conclusions: Although communities could benefit from being included in digital health systems, significant cultural, legal and social reforms from government were believed to be necessary to build trust in digital health systems. We argue that these forms of data justice are necessary for effective future systems. Policy Implications: Engaging stigmatised communities—including in relation to gender, sexuality, sex work, drug use, HIV—requires a commitment to data justice. The design and implementation of digital health systems requires investment in ongoing and meaningful consultation with communities and representative organisations. [ABSTRACT FROM AUTHOR]

From Re Stringer (1877) to Peekay Intermark Ltd v Australia and New Zealand Banking Group Ltd (2006), the contractual estoppel has consistently held partiesto contractual terms, including the assumed state of affairs. Against wider thinking that there is no theoretical basis to contractual estoppel, this article argues, by examining relevant case law, that voluntary undertaking or mutual assent of the parties best espouses the underlying principle that prevents either parties from asserting different facts. [ABSTRACT FROM AUTHOR]

Ultra-rapid genomic sequencing (urGS) is increasingly used in neonatal and pediatric intensive care settings (NICU/PICU), demonstrating high diagnostic and clinical utility. This study aimed to explore the perspectives of healthcare professionals (HPs) and the challenges raised by urGS, particularly when making treatment decisions. Four focus groups and two interviews were conducted with HPs who had experience using urGS in NICU/PICU. Inductive content analysis was used to analyze the data. Nineteen HPs participated overall (eight clinical geneticists, nine genetic counselors, and two intensivists). One challenging area of practice identified by HPs was setting realistic expectations for outcomes of urGS among HPs and families. HPs reported modifying pre-test counseling to include life-limiting diagnoses as a possible test outcome and felt concerned about the timing of the test and its impact on parent–child bonding. UrGS results of uncertain prognostic significance posed considerable challenges. Moral distress arose when families and HPs were misaligned regarding treatment goals following the urGS diagnosis. We identified areas of practice that remain ethically challenging for HPs using urGS in the NICU/PICU. HPs experiences of using urGS in the NICU/PICU could inform specialized training in withdrawal of treatment decision making for the genomics workforce. [ABSTRACT FROM AUTHOR]

Studies of Aboriginal young people have often followed a deficit approach depicting them as 'risky' and in need of help. In contrast, this study took a strengths-based approach and focussed on what Aboriginal young people value, how they stay safe and how their culture impacts their lives. 16 Aboriginal men aged 16 to 24 years were interviewed in Sydney, Australia. We examined Aboriginal young men's perspectives about relationships, sex and gender. Interviews were conducted by young Aboriginal men in 2019 and 2020. Overall, four features of positive sexual and romantic relationships were discussed: (1) love, connection and support; (2) enjoyment and fun; (3) responsibility, safety and consent; and 4) honesty, respect and trust. Additionally, three topics related to gender roles: (1) becoming a man; (2) sex as a masculine achievement; and (3) inequality and gender stereotypes. Our study suggests that Aboriginal young men are exploring sexual and romantic relationships, and although they value enjoyment and fun, they are aware of broader issues such as consent and respect. The young men acknowledged gender stereotypes faced by young women. Our results could be used by future school safe sex education programmes to better meet the needs of Aboriginal young men. [ABSTRACT FROM AUTHOR]

Introduction: Cisgender heterosexual boys and young men in Australia may experience or perpetuate a range of harms in their romantic and sexual encounters with women due to expectations that they adhere to problematic ideals and norms concerning masculinity and heterosexuality. This paper explores expert stakeholders' perceptions on these key issues, and their broader implications for policy and practice. Methods: Using inductive thematic analysis techniques, this paper draws on semi-structured interviews from 23 expert stakeholders working across sectors of gendered violence prevention, sexual health, relationships and sexuality education, sport, and emotional and physical wellbeing. Results: Findings note several key concerns, including (1) hesitation and lack of adequate information regarding relationships with women; (2) the potential negative influence of pornography; (3) the lack of opportunities to be engaged in sexual health promotion initiatives; and (4) limited opportunities to have meaningful conversations about dating, sex, and intimacy. Conclusions: Expert stakeholders note several important gaps in policy and practice that need to be addressed to better support cisgender heterosexual boys and young men, and to confront gendered violence and sexual violence. Social and Policy Implications: Understanding these gaps is vital for policymakers, content and program creators, and service providers working with cisgender heterosexual boys and men. We advocate for thinking about a strategy that is centred around "heterosexual intimacies", in which addressing boys and young men's sexual health and wellbeing is brought together with gendered violence prevention and sexual violence prevention initiatives. [ABSTRACT FROM AUTHOR]

Gender diversity allows individuals to express their innate sense of self and has been increasingly recognised over time. Consequently, paediatric gender services have seen exponential increases in referrals internationally. This has resulted in novel issues for courts, such as a child’s “best interests” when accessing puberty-suppressing and gender-affirming medical care. Most recently, in the United Kingdom, the adequacy of information provided to transgender children and their families was also debated. Progression of the common law in Australia has resulted in transgender children consenting to medical treatment once Gillick competent. Yet, Bell v Tavistock [2020] EWHC 3274 temporarily halted the care of the United Kingdom’s transgender children, who were previously afforded consenting rights. On appeal it was determined to be inappropriate for the divisional court to have provided generalised guidance on children’s capacity to consent to medical therapy. Through comparative analysis of case law, the adequacy of these regulations will be assessed. [ABSTRACT FROM AUTHOR]

This timely collation of case studies, written by and with Traditional Owners of diverse Australian offshore islands, offers direct insights into benefits arising from strategic and participatory action planning for biocultural island conservation and monitoring. We pay respect to the Old People and Elders whose dedicated care of their island homelands means we today can still experience their cultural and natural diversity. We extend greetings to our Pacifika neighbours, and to carers of islands around Earth. Our paper scopes socio-economic benefits arising from planning for islands, for Aboriginal peoples and Torres Strait Islanders, and more generally. Global, national, state and local co-investments support place-specific planning for some islands by Traditional Owners as a starting point toward shared governance and caring for Country. Case studies describe Country planning for Mayala Country in Australia's northwest, Woppaburra experiences within the Great Barrier Reef World Heritage Area and integrated biocultural health monitoring arising from remote island Indigenous Protected Area planning in Torres Strait. New institutional initiatives are also seeking to create solid foundations for more substantive island research collaborations. Across Australia, novel relationships grounded in culturally assured, holistically integrated approaches to island governance and caring for Country involving Traditional Owners and island resource users/managers are creating equity in livelihoods and stronger wellbeing. Australia's innovative Sea Country collaborations, with priorities initiated and led by island Traditional Owners, carry real value for sustained island conservation and provide positive inspirations for global humanity in the accelerating Anthropocene. Earth's islands face grave challenges. In Australia, innovation in island knowledge sharing between Traditional Owners and other island users and managers is moving beyond the participatory action planning space to generate equity in livelihoods and wellbeing on Sea Country. The tangible benefits arising are grounded in cultural governance and authority. [ABSTRACT FROM AUTHOR]

Organ transplant shortages are ubiquitous in healthcare systems around the world. In response, several commentators have argued for the adoption of an opt-out policy for organ transplantation, whereby individuals would by default be registered as organ donors unless they informed authorities of their desire to opt-out. This may potentially lead to an increase in donation rates. An opt-out system, however, presumes consent even when it is evident that a significant minority are resistant to organ donation. In this article, we defend a mandated choice framework for consent to deceased organ donation. A mandated choice framework, coupled with good public education, would likely increase donation rates. More importantly, however, a mandated choice framework would respect the autonomous preferences of people who do not wish to donate. We focus in particular on the Australian healthcare context, and consider how a mandated choice system could function as an ethical means to increase the organ donation rate in Australia. We make the novel proposal that all individuals who vote at an Australian federal election be required to state their organ donation preferences when voting. [ABSTRACT FROM AUTHOR]

Cosmetic surgery is becoming increasingly popular in Australia with the industry estimated to be worth over 1 billion dollars annually. Regulators both in Australia and internationally have been criticized for not keeping up with the rapidly changing field and keeping patients sufficiently safe in an environment that is problematically entrepreneurial. In this article, we explore the current regulation of and controversies surrounding cosmetic surgery in Australia, including the use of the title 'cosmetic surgeon', consent processes and the phenomenon of medical tourism. Lastly, we review the potential future reforms in Australia and how other countries have regulated the industry to keep patients safe. [ABSTRACT FROM AUTHOR]

It has been forty years since the first multi-channel cochlear implant was used in Australia. While heralded in the hearing world as one of the greatest inventions in modern medicine, not everyone reflects on this achievement with enthusiasm. For many people in the Deaf community, they see the cochlear implant as a tool that reinforces a social construct that pathologizes deafness and removes Deaf identity. In this paper, I set out the main arguments for and against cochlear implantation. While I conclude that, on balance, cochlear implants improve the well-being and broaden the open futures of deaf children, this does not justify mandating implants in circumstances where parents refuse them because this may compound unintended harms when society interferes in the parent-child relationship. For this reason, I argue that parental refusal of cochlear implantation falls within Gillam's concept of the zone of parental discretion. [ABSTRACT FROM AUTHOR]

Background: Clinicians and their employers, concerned with privacy and liability, are often hesitant to support the recording of clinical encounters. However, many people wish to record encounters with healthcare professionals. It is therefore important to understand how existing law applies to situations where an individual requests to record a clinical encounter. Methods: We searched for and reviewed relevant legal documents that could apply to recording clinical encounters. We limited the scope by purposefully examining relevant law in nine countries: Australia, Brazil, Canada, France, Germany, India, Mexico, the United Kingdom and the United States. We analyzed legal texts for consents needed to record a conversation, whether laws applied to remote or face-to-face conversations and penalties for violations. Findings: Most jurisdictions have case law or statutes, derived from a constitutional right to privacy, or a wiretapping or eavesdropping statute, governing the recording of private conversations. However, little to no guidance exists on how to translate constitutional principles and case law into advice for people seeking to record their medical encounters. Interpretation: The law has not kept pace with people's wish to record clinical interactions, which has been enabled by the arrival of mobile technology. [ABSTRACT FROM AUTHOR]

Human genetic and genomic information (HGI) is being generated, utilized and accessed across a wide range of healthcare settings. While traditionally clinical genetics services have maintained guardianship and enforced rigid protections of human genetic information, this is no longer practical or feasible as genetic knowledge continues to evolve, expand and inform various aspects of healthcare. Today, many healthcare professionals of varied backgrounds and areas of expertise are looking to genetic and genomic information to screen and/or diagnose genetic conditions and to guide medical management and treatment options. This position statement provides guidance for all healthcare professionals who may be handling human genetic and/or genomic information as part of their practice and outlines considerations relevant to protection, storage, access and sharing of HGI in Australasia. Illustrative cases are used to highlight various sensitivities of genetic and genomic information and challenges these may pose in modern healthcare settings. In essence, this position statement seeks to highlight and advocate for both individual interests as well as the interests of the broader family network. [ABSTRACT FROM AUTHOR]

Genital body image is a highly understudied concept but is important for sexual health and broader body image satisfaction. Effective genital body image interventions for adolescents have been developed, however, parental consent can be a barrier to adolescent participation. The aim of this study was to conduct a novel exploration of parental consent for genital body image education research and factors related to this consent. Participants were 125 parents of adolescents in Australia who completed an online questionnaire including measures of demographic characteristics, personality traits and attitudes, and likelihood of consent for an adolescent son and daughter participating in hypothetical genital body image education research. The vast majority of parents indicated that they definitely would consent to their adolescent sons' and daughters' involvement in this hypothetical research. There was no significant difference in likelihood of consent based on the gender of the adolescent. Parents having more conservative attitudes towards sex was the only factor tested that reduced the likelihood of providing consent. Overall, our results suggest parents are generally supportive of adolescent involvement in genital body image education research. This concept should be included in broader body image educational programs so adolescents gain exposure to this important but neglected topic., Competing Interests: Declaration of Competing Interest Nothing to declare for A/Prof Gemma Sharp, Vanessa Kellermann, Yukti Mehta, Anne Nileshni Fernando, and Madeline L. West., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

The offence of sexual assault has been reformed significantly since the 1980s. These reforms have been designed to create a fairer criminal justice system and contribute to primary prevention through community education. Yet, how exactly does this education happen? This article draws on a qualitative interview study with government and non‐government stakeholders in the Australian State of NSW to consider how members of the public are equipped with the information they need to understand the laws that govern their sexual lives. Despite multiple educational pathways on key legal concepts such as consent, the study found a knowledge gap between the legal meaning of sexual assault and effective public access to that meaning. The article concludes with recommendations for addressing the barriers that undergird this gap. It argues that law's educative promise depends on the state's preparedness to create policy that fosters the public's appreciation of the sexual standards embedded in legal rules. [ABSTRACT FROM AUTHOR]

The aim of this qualitative study was to explore the use of interpreters among Chinese speaking inpatients having a surgical procedure at an Australian metropolitan hospital. The summary of the findings are: * Patients often understood it to be their obligation to seek language assistance from their family members or friends. For this reason patients did not request an interpreter either during their visit to the surgeon (when written consent is routinely completed) or during hospitalisation. * It is common practice for 'bilingual' surgeons to obtain informed consent even if the patient perceives that the surgeon cannot speak the language fluently. * Staff under-utilised interpreters even if they were available and their benefits understood. These findings provide valuable information in which to plan for improvement in the stomal service and the wider organisation. Education and information can be shaped to improve the use of healthcare interpreters to the non-English speaking population at key milestones in their hospital journey. [ABSTRACT FROM AUTHOR]

Background: There is good evidence of both community support for sharing public sector administrative health data in the public interest and concern about data security, misuse and loss of control over health information, particularly if private sector organizations are the data recipients. To date, there is little research describing the perspectives of informed community members on private sector use of public health data and, particularly, on the conditions under which that use might be justified. Methods: Two citizens' juries were held in February 2020 in two locations close to Sydney, Australia. Jurors considered the charge: 'Under what circumstances is it permissible for governments to share health data with private industry for research and development?' Results: All jurors, bar one, in principle supported sharing government administrative health data with private industry for research and development. The support was conditional and the juries' recommendations specifying these conditions related closely to the concerns they identified in deliberation. Conclusion: The outcomes of the deliberative processes suggest that informed Australian citizens are willing to accept sharing their administrative health data, including with private industry, providing the intended purpose is clearly of public benefit, sharing occurs responsibly in a framework of accountability, and the data are securely held. Patient and Public Contribution: The design of the jury was guided by an Advisory Group including representatives from a health consumer organization. The jurors themselves were selected to be descriptively representative of their communities and with independent facilitation wrote the recommendations. [ABSTRACT FROM AUTHOR]

When children participate in online sexual behaviour, such as 'sexting', there can be a range of legal and social consequences. Criminal law in Australia does not consistently address sexting, which means that in some jurisdictions, children who participate in sexting can be liable for offences related to child sexual abuse material (CSAM). Children who are 16 or 17 years old have reached the age to consent to sexual activity, yet the law, in many jurisdictions, does not allow them to participate in sexting. This paper seeks to reconceptualise sexting among older children as a separate practice to possessing and/or distributing CSAM. It explores the socio-legal considerations which arise when older children possess and share intimate online material, including how the age of consent to sexual activity is relevant to their participation in sexting. [ABSTRACT FROM AUTHOR]

Background The number of international students at Australian universities is rapidly increasing, and they contribute significantly to Australia's economy. However, concerns have been raised for the health and wellbeing of international students, and there is limited information concerning international students with regard to their sexual health.Methods: Overall, 13 individual semi-structured in-depth interviews were conducted with 13 international students at an Australian university, aiming to understand the views and experiences of international students with regard to their sexual health and wellbeing. The interviews were analysed thematically, generating four themes.Results: Participants had a varied understanding of sexual consent, which often included concerns about the practicalities of saying 'no' to unwanted sexual interactions and misinformation about the effect of reporting sexual misconduct on their privacy and visa status. Cultural and familial taboos were often inherited, but many participants described an evolution of personal views and attitudes regarding topics such as sex before marriage and same-sex relationships, which had occurred since moving to Australia. Participants expressed that they received large amounts of information about sexual health, but often lacked the skills to navigate that information and access relevant support.Conclusions: These data, along with participants' suggestions for future support and education, are important for understanding the complex experiences of international students at Australian universities, and should be considered when implementing future sexual health education and support programs. [ABSTRACT FROM AUTHOR]

Complex medical procedures such as allogeneic bone marrow transplant (allo-BMT) require extensive medical and psychosocial information to be communicated to patients. Whereas, previously, patients only received information from their doctor and only during consultations, increasingly they access information in various modalities, from numerous sources and from a range of different health professionals, and at different times throughout the course of their illness and treatment. We present qualitative data from interviews with patients and nurses reflecting on information provision during allo-BMT. Patients' vulnerability and the unpredictability of transplant outcomes highlights the necessity for, and importance of, ongoing information support. In this paper we highlight the role of nurses in supporting patients' and families' informational needs throughout the transplant trajectory. Nurses have a critical role in ensuring that patients receive relevant, rigorous and salient information during the course of allo-BMT so that their autonomy is respected and their adherence and capacity to cope is optimised. [ABSTRACT FROM AUTHOR]

This article summarises a recent South African case, Baleni v Minister of Mineral Resources. It also analyses the Court's reasoning to explore how a non-Australian common law state protects a traditional community's customary laws and practices through legislation, a Constitutional Bill of Rights, and international law. Although a South African case, Baleni demonstrates how similar common law countries have adopted distinct approaches to protecting and treating traditional communities, from which Australian lawmakers could learn. [ABSTRACT FROM AUTHOR]

In 2007, significant reforms were made to the law of sexual assault in New South Wales, Australia. These reforms introduced communicative ideals into the physical and mental element of the offence of sexual assault. Ten years later, the first appellate decisions directly on these aspects of the reforms were handed down. These decisions are part of a suite of four cases emerging from the prosecution of a young man, Luke Lazarus, for the sexual assault of an 18-year-old woman in Sydney. This article analyses the judgments in these cases. It aims to provide insights into judicial thinking on key communicative aspects of sexual assault law in New South Wales, particularly the twin concepts of autonomy and responsibility that are embedded in the communicative model of consent. It argues that while there are encouraging signs of progress in judicial interpretation of women's sexual autonomy, there is reason to be concerned that law reform in this area may have had little impact when it comes to placing an expectation upon men to take responsibility for sexual communication. [ABSTRACT FROM AUTHOR]

Objective: It is increasingly recognised that persons with mental illness experience physical health issues at greater rates than the general population and that there are significant barriers to accessing appropriate treatment. One less obvious barrier to appropriate care may be the law. This review examines the legal regimes within Australia and New Zealand that regulate consent for medical and surgical treatment for persons detained under mental health legislation. The review begins with a brief overview of concepts of consent and capacity then examines the law with regards to consent for non-psychiatric treatment for persons detained in psychiatric facilities. The complexity and cross-jurisdictional consistency is considered and potential future directions and possibilities for reform are discussed.Conclusion: Examination of the different laws regarding consent for medical or surgical treatment for persons admitted to psychiatric facilities are complex and demonstrate lack of consistency across jurisdictions. Reform in this area might be considered to achieve greater consistency and clarity for both health professionals and consumers. [ABSTRACT FROM AUTHOR]

Objectives: The assessment and management of a patient who refuses medical treatment requires clinical skill, and consideration of the relevant law and the patient's decision-making capacity. Psychiatrists are often asked to advise in these situations. We aimed to develop an algorithm describing the relevant legal pathways to assist clinicians, especially psychiatrists, working in New South Wales (NSW), Australia.Methods: We reviewed the academic literature on treatment refusal, relevant legislation, judicial rulings and NSW Health policy directives and guidelines. We consulted with clinicians and representatives of relevant tribunals.Results: We developed an algorithm for managing patients who refuse medical treatment in NSW. The algorithm emphases the evaluation of decision-making capacity and tracks separate pathways depending upon a person's status under the Mental Health Act 2007 (NSW).Conclusions: The algorithm provides a clear decision tree for clinicians responding to a patient refusing medical treatment in NSW. [ABSTRACT FROM AUTHOR]

Objective: To give voice to the general public's views of prospective and retrospective (deferred) consent in the emergency research setting. Methods: A cross-sectional, stratified population-based, telephone survey was conducted in April to July 2016. A questionnaire consisting of standardised health and demographic details, and seven specifically designed, and pilot-tested questions, five closed and two open text, based on literature review and previous surveys in the field was used. Quantitative and qualitative techniques were used in the data analysis. This was a centrally coordinated national telephone survey in Australia, the 2016 National Social Survey, coordinated by Central Queensland University. Data for 1217 adult (18+ years) participants were included in the analysis, with a response rate of 26%. The sample demographics were broadly representative of the Australian population. Results: The majority of respondents were supportive of research in emergency circumstances without prospective informed consent. However, the type of research and level of risk influence its acceptability. Common themes in qualitative analysis included the critical or life-threatening nature of the illness being researched, and the potential harms and benefits of participation. Conclusions: This research provided the first opportunity for the community to contribute to discourse about prospective and retrospective (deferred) consent in the emergency research setting in Australia. Further work is needed to determine community expectations of how this process can be optimised and implemented, and to identify potential situations where this may not be acceptable. [ABSTRACT FROM AUTHOR]

Current research ethics processes, based on the mantra of privacy and institutional protection, take a paternalistic approach to research participants that leaves them open to harm. Reflecting on our own research/consultancy as a case study to illustrate the current flaws, we explore our and our subjects’ experiences within the wider political context of institutional ethical rules and the Australian NHMRC guidelines. In doing so we argue for fundamental changes to the modern research ethics processes – a system that treats participants more as research collaborators rather than victims in waiting. A complete review of ethics processes is needed to empower participants and researchers to recognize the reality of the process as co-created and negotiated. This includes changes at the top level of research administration – a shift in ethics policies and procedures as well as greater education in ethics with commensurate trust for active researchers. [ABSTRACT FROM AUTHOR]

Informed consent is critical in research with children. Although much has been written about the need to see consent as an ongoing process, less has considered how to do it in practice. This article reflects on the authors’ experiences of conducting a piece of research focusing on children’s experiences of safety from abuse within institutional contexts. It draws on feedback provided by participants and the guidance of three Children’s Reference Groups. The importance of presenting information in accessible and appropriate ways, of providing opportunities for participants to negotiate their participation and for in-the-moment challenges be dealt with collaboratively and reflexively are stressed. To illustrate our approach, we provide a number of consent tools and describe how they were utilised. [ABSTRACT FROM AUTHOR]

Research is crucial to advancing knowledge about dementia, yet the burden of the disease currently outpaces research activity. Research often excludes people with dementia and other cognitive impairments because researchers and ethics committees are concerned about issues related to capacity, consent, and substitute decision-making. In Australia, participation in research by people with cognitive impairment is governed by a national ethics statement and a patchwork of state and territorial laws that have widely varying rules. We contend that this legislative variation precludes a consistent approach to research governance and participation and hinders research that seeks to include people with impaired capacity. In this paper, we present key ethical principles, provide a comprehensive review of applicable legal rules in Australian states and territories, and highlight significant differences and ambiguities. Our analysis includes recommendations for reform to improve clarity and consistency in the law and reduce barriers that may exclude persons with dementia from participating in ethically approved research. Our recommendations seek to advance the national decision-making principles recommended by the Australian Law Reform Commission, which emphasize the rights of all adults to make their own decisions and for those with impaired capacity to have access to appropriate supports to help them make decisions that affect their lives. [ABSTRACT FROM AUTHOR]

Extracted human teeth have been used to practice operative techniques for a very long time. As a natural surrogate for a live tooth in vivo, their use has traditionally been very important for the development of skills in trainee dentists, as well as their qualified colleagues who wish to practise existing or new skills. As synthetic alternatives develop greater authenticity, alongside a society in which many retain their natural dentition well into old age, the current paradigm relating to how extracted teeth in dental education are used needs to be revisited. An ethical and legal dilemma that must be addressed within dental education relates to where and how teeth may be sourced. This article will seek to question whether there is a legal or ethical requirement to gain consent for the use of extracted teeth from patients, as well as exploring the status of whether extracted dental tissue can be considered to be the property of either patient or surgeon. Whilst synthetic alternatives are being utilized more frequently in education, it is unlikely that they will completely replace extracted natural teeth in the immediate future. It is therefore imperative that their use complies with legal doctrine and contemporary ethical thought. [ABSTRACT FROM AUTHOR]

Background: Researchers are required to seek consent from Indigenous communities prior to conducting research but there is inadequate information about how Indigenous people understand and become fully engaged with this consent process. Few studies evaluate the preference or understanding of the consent process for research with Indigenous populations. Lack of informed consent can impact on research findings.Methods: The Picture Talk Project was initiated with senior Aboriginal leaders of the Fitzroy Valley community situated in the far north of Western Australia. Aboriginal people were interviewed about their understanding and experiences of research and consent processes. Transcripts were analysed using NVivo10 software with an integrated method of inductive and deductive coding and based in grounded theory. Local Aboriginal interpreters validated coding. Major themes were defined and supporting quotes sourced.Results: Interviews with Aboriginal leaders (n = 20) were facilitated by a local Aboriginal Community Navigator who could interpret if necessary and provide cultural guidance. Participants were from all four major local language groups of the Fitzroy Valley; aged 31 years and above; and half were male. Themes emerging from these discussions included Research-finding knowledge; Being respectful of Aboriginal people, Working on country, and Being flexible with time; Working together with good communication; Reciprocity-two-way learning; and Reaching consent.Conclusion: The project revealed how much more there is to be learned about how research with remote Aboriginal communities should be conducted such that it is both culturally respectful and, importantly, meaningful for participants. We identify important elements in community consultation about research and seeking consent. [ABSTRACT FROM AUTHOR]

This article takes the notion of ‘refusal’ to be an alternative to recognition politics in settler colonial society. This is argued as alternative with recourse to ethnographic examples that highlight the way in which ‘consent’ operates as a technique of recognition and simultaneous dispossession in historical cases from Indigenous North America and Australia. Attention is paid to the ways in which Indigenous life in these cases refused, did not consent to, andstill refusesto be folded into a larger encompassing colonising and settler colonial narratives of acceptance, and in this, a governmentalfait accompli. It is those narratives that inform the apprehension and at times, the ethnography and governance of Indigenous life and are pushed back upon in order to document, reread, theorise and enact ways out of the notion of a fixed past and settled present. [ABSTRACT FROM PUBLISHER]

Since the mid‐90s, Australian law has required doctors to disclose material risks of proposed treatment. Medical practitioners have had two decades to adapt, and, by and large, patient autonomy is acknowledged and respected by obtaining 'informed consent'. While problems with obtaining consent do surface in medico‐legal litigation, practitioners are generally aware of the need to do so and usually comply with requirements. However, not in obstetrics. Here, even if material risk of a serious adverse event in an attempt at vaginal birth in a given case is over 50% (as it would be in the case of a 35‐year‐old primigravida at 41 + 3) obtaining informed consent is the exception rather than the rule. This degree of paternalism is not just unethical and immoral. It is illegal – and it needs to change. [ABSTRACT FROM AUTHOR]

Background: Informed consent is the legal requirement to educate a patient about a proposed medical treatment or procedure so that he or she can make informed decisions. The purpose of the study was to examine the current practice for obtaining informed consent for third molar tooth extractions (wisdom teeth) by oral and maxillofacial surgeons in Australia and New Zealand.Methods: An online survey was sent to 180 consultant oral and maxillofacial surgeons in Australia and New Zealand. Surgeons were asked to answer (yes/no) whether they routinely warned of a specific risk of third molar tooth extraction in their written consent.Results: Seventy-one replies were received (39%). The only risks that surgeons agreed should be routinely included in written consent were a general warning of infection (not alveolar osteitis), inferior alveolar nerve damage (temporary and permanent) and lingual nerve damage (temporary and permanent).Conclusions: There is significant variability among Australian and New Zealand oral and maxillofacial surgeons regarding risk disclosure for third molar tooth extractions. We aim to improve consistency in consent for third molar extractions by developing an evidence-based consent form. [ABSTRACT FROM AUTHOR]

We aimed to describe the experiences of families of potential organ and tissue donors eligible for donation after circulatory death or brain death. Forty-nine family members of potential donors from four Melbourne hospitals were interviewed to assess their experiences of communication, processes and the outcomes of donation. Interviews were recorded, transcribed verbatim and analysed thematically. Families expressed a range of perspectives on themes of communication, hospital processes and care, the processes of consent and donation and reflected on decisions and outcomes. They expressed satisfaction overall with communication when receiving bad news, discussing death and donation. Honest and frank communication and being kept up-to-date and prepared for potential outcomes were important aspects for families, especially those of post circulatory death donors. Participants reported high levels of trust in healthcare professionals and satisfaction with the level of care received. Many donor families indicated the process was lengthy and stressful, but not significantly enough to adversely affect their satisfaction with the outcome. Both the decision itself and knowing others' lives had been saved provided them with consolation. No consenting families, and only some non-consenting families, regretted their decisions. Many expressed they would benefit from a follow-up opportunity to ask questions and clarify possible misunderstandings. Overall, while experiences varied, Australian families valued frank communication, trusted health professionals, were satisfied with the care their family member received and with donation processes, despite some apparent difficulties. Family satisfaction, infrequently assessed, is an important outcome and these findings may assist education for Australian organ donation professionals. [ABSTRACT FROM AUTHOR]

Background Obtaining family consent to organ donation is a significant obstacle to improving further Australian deceased organ donation rates. Currently, neither the consent rates for donors eligible to donate after circulatory death, nor factors that influence decision to decline or consent to donation in general are known in Australia. Methods This study at four university teaching hospitals in Melbourne, Victoria, examined consecutive patients where organ donation was discussed with the family Results A total of 123 cases were identified; the family consent rate was 52.8%, and 34.1% proceeded to donation. Consent to donation was related to potential donor factors such as country of birth, cultural background in Australia, a non-religious or Christian background and registration on the Australian Organ Donor Register. Family-related factors included being English speaking and having knowledge of the deceased's wishes about organ donation. Family of donation after circulatory death-eligible donors were less likely to consent to donation than the family of donation after brain death-eligible donors, although not reaching statistical significance. Among consented potential donors, those eligible for donation after brain death and with a shorter length of stay were more likely to proceed to donating organs for transplantation. Conclusion Despite a small sample size, these findings describe current consent and donation rates and associated factors and may assist in improving conversations about organ donation. [ABSTRACT FROM AUTHOR]

Background:A national Personally Controlled Electronic Health Record (PCEHR) system was made available across Australia in July 2012. While the technical, policy, and commercial aspects of the new Australian PCEHR system were examined thoroughly by the National E-Health Transition Authority in developing the new e-health record system, little attention was given to examining the related ethical implications of PCEHR advances. This article reports on ethical concerns about the new Australian electronic health record system identified by expert stakeholders.Methods:A qualitative study using semistructured interviews with a purposive sample of key informants from Melbourne, Canberra, Brisbane, and Sydney with expert knowledge about electronic health records was conducted. The 12 participants represented a range of health and other professionals, research, policy, and consumer/patient groups.Results:Major themes identified were the importance of privacy safeguards at implementation and in future PCEHR uses, the appropriate uses of PCEHR data in research, unique ethical challenges around children and adolescents with PCEHRs, conflicting stakeholder interests around record access and use, and cultural diversity and engagement.Conclusions:The technical, policy, and commercial aspects of the new Australian PCEHR system have been examined thoroughly to date. A greater focus is needed on the ethical implications of PCEHR advances. A continuing failure to address ethical issues in the national implementation and utilization of the PCEHR could limit its uptake and success in Australia, and is also not without risks to the future participants of such a system. [ABSTRACT FROM PUBLISHER]

Rates of transplantation from deceased donors remain low, despite high rates of expressed support. We aimed to better understand this mismatch through determining community attitudes regarding willingness to register as organ donors. Participants were recruited from the general public in four Australian states. Using nominal group techniques, participants ranked factors they believed were important when deciding to register as a deceased donor. Thirteen nominal groups with 114 participants were conducted. 24 factors were ranked by three or more groups. The top ten factors were as follows: saving lives, own decision to donate, family opinions, benefit to recipients, process of organ donation, positive media, positive closure, clarity of consent and body dignity. Other factors included: the consent system, religious and cultural beliefs and incentives for donation. Participant age was a potential modifier of responses. Willingness to register as an organ donor is highly influenced by the altruistic motive of saving lives and improving lives for others; this should be harnessed in communication campaigns. Further research on ethical incentives for organ donation and continued efforts to promote support from religious groups may be useful. Many believe the sole right to consent to donation is theirs and not their families; consent policies reflecting this should be explored. [ABSTRACT FROM AUTHOR]

The motivations of those who give consent to bio-banking research have received a great deal of attention in recent years. Previous work draws upon the notion of altruism, though the self and/or family have been proposed as significant factors. Drawing on 11 interviews with staff responsible for seeking consent to cancer bio-banking and 13 observations of staff asking people to consent in routine clinical encounters, we investigate how potential participants are oriented to, and constructed as oriented to, self and other related concerns (Sarangi 2007). We adopt a rhetorical discourse analytic approach to the data and our perspective can be labelled as 'ethics-in-interaction'. Using analytic concepts such as repetition, extreme case formulation, typical case formulation and contrast structure, our observations are three-fold. Firstly, we demonstrate that orientation to 'general others' in altruistic accounts and to 'self' in minimising burden are foregrounded in constructions of motivation to participate in cancer bio-banking across the data corpus. Secondly, we identify complex relational accounts which involve the self as being more prominent in the consent encounter data where the staff have a nursing background, whereas 'general others' feature more when the staff have a scientific background. Finally, we suggest implications based on the disparities between how participants are oriented during interviews and consent encounters, which may have relevance for developing professional reflective practice. [ABSTRACT FROM AUTHOR]

People's decision to join an organ donor registry and have a discussion with family about their organ donation preference increases the likelihood that their family will consent to donation of their organs. This study explores the effectiveness of three interventions compared to a control condition to increase individual consent (registering and discussing donation wishes) for organ donation. Australian residents who had not previously communicated their consent (N = 177) were randomly allocated to complete an online survey representing either an extended theory of planned behaviour motivational intervention (strengthening intentionviaattitudes, subjective norms, control, moral norms and identity), a volitional intervention using constructs from the health action process approach (strengthening the translation of intentions into action using action plans and coping plans), a combined motivational and volitional intervention, or a control condition. Registering, but not discussing, intentions increased in the motivational compared to non-motivational conditions. For joining the organ donor registry, the combination of strengthening intentions (motivational) as well as forming specific action (when, where, how, and with whom for discussing) and coping (listing potential obstacles and how these may be overcome) plans (volitional) resulted in significantly higher rates of self-reported behaviour. There was no evidence for this effect on discussion. [ABSTRACT FROM PUBLISHER]

Australian, New Zealand, English and Canadian courts have made a number of orders, often in the context of parenting disputes, requiring children to be vaccinated. Complementary therapy options have generally not been permitted as an alternative to mainstream vaccination. Debates about parental entitlements to make decisions about such matters have taken place in the context of contested family law litigation during the COVID-19 era. However, by contrast with Ontario Superior Court of Justice decisions in 2022, a series of Australian decisions, including the judgment of Sutherland CJ in Clay & Dallas [2022] FCWA 18, have developed the law further, having regard to both the capacity of a minor to consent to vaccination and reviewing a variety of factors going to children's best interests at different junctures during the pandemic, finding it generally to be in the best interests of children to receive COVID-19 vaccinations. This is likely to flow back into curial decision-making about vaccinations more broadly, as well as cognate matters., Competing Interests: None.

Introduction: Parental decision regret in hypospadias surgery is a recognised source of long-lasting psycho-social morbidity. High parental decision regret after their child's hypospadias repair is reported. The aim of this study is to report on decision regret in Australian parents, who accepted and declined surgery for their son and explore underlying factors for decision-making, satisfaction, and regret., Materials and Methods: An online anonymous survey was administered to three groups of parents: 1) parents who consented for hypospadias repair, 2) parents who declined repair and 3) a control group who requested circumcision for their child. Operations occurred between 2010 and 2020 in two paediatric hospitals in New South Wales, Australia. The survey included a validated decision regret assessment tool and additional questions to explore the possible basis of the opinions., Results: One hundred and eighteen parents (invited - 381, completed - 116, response rate - 31%) participated in the survey. Decision regret was present in group 1 (n = 89) - 55% (moderate-to-severe 15%), in group 2 (n = 14) - 71% (moderate-to-severe 57%), and in the control group (n = 15) - 15% (moderate-to-severe 8%) of parents. There was a significant difference in the median decision regret score between all three groups. Parents who chose hypospadias repair were mostly concerned about function., Conclusions: The prevalence of decision regret among Australian parents who consented for their son's hypospadias repair was lower compared with the mean decision regret reported in the literature to date (55% vs 65%). Decision regret and its severity were highest among parents who declined hypospadias repair. New strategies are needed to reduce decision regret in parents whether they elect for surgery or not., Competing Interests: Conflicts of interest No conflict of interest., (Crown Copyright © 2022. Published by Elsevier Ltd. All rights reserved.)

The article discusses a study which analyzes the readability of patient information and consent forms used in research studies in anaesthesia in Australia and New Zealand. The study was designed to test the hypothesis that the language used in medical forms fails to meet satisfy the readability standards or requirements of the Good Clinical Practice Guidelines of the National Health and Medical Research Council in Australia and the Health Council of New Zealand.

Background: Informed consent prior to anesthesia is an important part of the pediatric pre-anesthetic consultation. This study aimed to observe and identify the number and nature of the anesthesia risks considered and communicated to parents/guardians and children during the pediatric informed consent process on the day of elective surgery. Methods: A convenience sample of anesthetists had their pre-anesthesia consultations voice recorded, prior to elective surgery, during a 4-month period at the largest tertiary referral centre for pediatric care in South Australia. A data collection form was used to note baseline demographic data, and voice recording transcripts were independently documented by two researchers and subsequently compared for accuracy regarding the number and nature of risks discussed. Results: Of the 96 voice recordings, 91 (92%) were suitable for the analysis. The five most commonly discussed risks were as follows: nausea and vomiting (36%); sore throat (35%); allergy (29%); hypoxia (25%); and emergence delirium (19%). Twenty-seven pre-anesthetic consultations (30%) were found to have had no discussion of anesthetic risk at all while a further 23 consultations (26%) incorporated general statements inferring that anesthesia carried risks, but with no elaboration about their nature, ramifications or incidence. The median number of risks (IQR) specifically mentioned per consultation was higher, 3 (1) vs 1 (1), P < 0.05, when the consultation was performed by a trainee rather than a consultant anesthetist and when the patient had previous anesthesia experience odds ratio 0.34, 95% CI [0.13, 0.87], P = 0.025. Conclusions: The pediatric anesthesia risk discussion is very variable. Trainees tend to discuss more specific risks than consultants and a patient's previous experience of anesthesia was associated with a more limited discussion of anesthesia risk. [ABSTRACT FROM AUTHOR]