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The focus of this methodological paper is to discuss the challenges of conducting fieldwork, using reflections from our experiences of accessing a research site for ethnographic data collection. The research project aimed to explore nurses' social relations in their workplace and the inequities between and within these relations among nurses of diverse social positions. Due to the sensitive nature of this topic, access to the research site posed several challenges and was further complicated by the bureaucratic ethics process that governs clinical sites in Australia. Although this study was considered a low and negligible risk research, negotiating the ethics process was full of hitches and hindrances resulting in the refusal of access. This paper offers ethnographers a reflection on challenges in accessing clinical sites to conduct research and a discussion of strategies that may be useful to navigate and counter these challenges by managing social relations in the field. [ABSTRACT FROM AUTHOR]

Public protest continued to represent a prominent form of social activism in democratic societies during the COVID-19 pandemic. In Australia, a lack of specific legislation articulating protest rights has meant that, in the context of pandemic restrictions, such events have been treated as illegal mass gatherings. Numerous large protests in major cities have, indeed, stirred significant public debate regarding rights of assembly during COVID-19 outbreaks. The ethics of infringing on protest rights continues to be controversial, with opinion divided as to whether public health goals or human rights should take precedence. This paper applies public health ethical theory to an in-depth analysis of arguments on both sides of the debate. Using the Nuffield Council on Bioethics framework as a backdrop, proportionality and necessity of restrictions are understood as key concepts that are common to both public health and human rights perspectives. The analysis presented here finds a middle-ground between the prevailing arguments on opposing sides and is further able to rationalize the use of protest itself as an important element of a mature public health ethics response to restrictive policy. Thus, this paper aims to influence public health policy and legislation regarding protest rights during public health emergencies. [ABSTRACT FROM AUTHOR]

Noninvasive prenatal testing (NIPT) has become widely available in recent years. While initially used to screen for trisomies 21, 18, and 13, the test has expanded to include a range of other conditions and will likely expand further. This paper addresses the ethical issues that arise from one particularly controversial potential use of NIPT: screening for adult‐onset conditions (AOCs). We report data from our quantitative survey of Australian NIPT users' views on the ethical issues raised by NIPT for AOCs. The survey ascertained support for NIPT for several traits and conditions including AOCs. Participants were then asked about their level of concern around implications of screening for AOCs for the future child and parent(s). Descriptive and comparative data analyses were conducted. In total, 109 respondents were included in data analysis. The majority of respondents expressed support for NIPT screening for preventable (70.9%) and nonpreventable AOCs (80.8%). Most respondents indicated concern around potential harmful impacts associated with NIPT for AOCs, including the psychological impact on the future child and on the parent(s). Despite this, the majority of participants thought that continuation of a pregnancy known to be predisposed to an AOC is ethically acceptable. The implications of these data are critically discussed and used to inform the normative claim that prospective parents should be given access to NIPT for AOCs. The study contributes to a body of research debating the ethical acceptability and regulation of various applications of NIPT as screening panels expand. [ABSTRACT FROM AUTHOR]

Qualitative studies on assisted reproductive technology commonly focus on the perspectives of participants living in major metropolises. In doing so, the experiences of those living outside major cities, and the unique way conditions of spatiality shape access to treatment, are elided. In this paper, we examine how location and regionality in Australia impact upon access and experience of reproductive services. We conducted twelve qualitative interviews with participants residing in regional areas across Australia. We asked participants to discuss their experience with assisted reproduction services and the impacts of location on access, service choice, and experience of care, and analysed the data using reflexive thematic analysis, as outlined by Braun and Clarke (2006, 2019). Participants in this study reported that their location impacted the services available to them, required considerable time in travel, and reduced continuity of care. We draw on these responses to examine the ethical implications of uneven distribution of reproductive services in commercial healthcare settings which rely on market-based mechanisms. [ABSTRACT FROM AUTHOR]

Australia has recently legalised mitochondrial donation. However, key ethical and legal issues still need to be addressed. This paper maps the relevant issues and offers some suggestions for how they ought to be resolved. [ABSTRACT FROM AUTHOR]

It is presently unclear whether a distinct "rural ethics" of navigating professional boundaries exists, and if so, what theoretical approaches may assist practitioners to manage overlapping relationships. To be effective clinicians while concurrently partaking in community life, practitioners must develop and maintain safe, ethical, and sustainable therapeutic relationships in rural and remote healthcare. A narrative review was conducted identifying a significant body of qualitative and theoretical literature which explores the pervasiveness of dual relationships for practitioners working in rural and remote healthcare. Rather than viewing dual relationships as ethically unacceptable, much contemporary work focusses on the lived experiences of healthcare workers and explores what approaches may be available that both protect the therapeutic relationship while recognizing the unique nature of rural and remote healthcare practice. We conclude that practitioners must have a means of operating within a contextually informed ethics of professional boundaries. Drawing on pre-existing work, one schema is proposed that could form the basis for further engagement through interactive teaching sessions, professional development, mentoring, or guidelines. [ABSTRACT FROM AUTHOR]

An editorial is presented on the role of the nurse ethicist. It discusses the background and history of nursing ethics, particularly exploring the experiences and perspectives of nurse ethicists. It also touches on the challenges and debates surrounding the title "Nurse Ethicist" and examines the unique contributions of nurses with ethics training in the clinical ethics domain.

In this paper, the evolution of the ethics committees for health research, their history, membership, and function in China and Australia is described. Investigators in each country compared the history and governance of their ethical systems based on the published evidence rather than personal opinions. Similarly, examples of challenges were selected from the literature. In both countries, the aim was to maximize the social benefits of research and minimize the risk imposed on the participants. Common challenges include maintaining independence, funding and delivering timely ethical reviews of the research projects. These challenges can be difficult where research ethics committees rely on voluntary contributions and lack a strong resource base. They must adapt to the increasingly rapid pace of research as well as the technological sophistication. Population health research can challenge the conventional views of consent and privacy. The principles of the sound ethical review are common in both countries; governance arrangements and operational procedures, however, can differ, reflecting the cultural values and norms of their host countries and in respect of legal environments. By studying the evolution and function of ethics committees in the two countries, we established the differences in the governance and health systems, while similar ethical objectives helped sustain collaborative research. [ABSTRACT FROM AUTHOR]

Recently, Australia became the second jurisdiction worldwide to legalize the use of mitochondrial donation technology. The Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 allows individuals with a family history of mitochondrial disease to access assisted reproductive techniques that prevent the inheritance of mitochondrial disease. Using inductive content analysis, we assessed submissions sent to the Senate Committee as part of a programme of scientific inquiry and public consultation that informed drafting of the Bill. These submissions discussed a range of bioethical and legal considerations of central importance to the political debate. Significantly, submissions from those with a first-hand experience of mitochondrial disease, including clinicians and those with a family history of mitochondrial disease, were in strong support of this legislation. Those in support of the Bill commended the two-staged approach and rigorous licencing requirements as part of the Bill's implementation strategy. Submissions which outlined arguments against the legislation either opposed the use of these techniques in general or opposed aspects of the implementation strategy in Australia. These findings offer a window into the ethical arguments and perspectives that matter most to those Australians who took part in the Senate inquiry into mitochondrial donation. The insights garnered from these submissions may be used to help refine policy and guidelines as the field progresses. [ABSTRACT FROM AUTHOR]

Background: No previous study has provided evidence for the scope and frequency of ethical dilemmas for paediatric nurses. It is essential to understand this to optimise patient care and tailor ethics support for nurses. Research aim: The aim of this study was to explore the scope of nurses' ethical dilemmas in a paediatric hospital and their engagement with the hospital clinical ethics service. Research design: This study used a cross-sectional survey design. Participants and research context: Paediatric nursing staff in a tertiary paediatric centre in Australia completed an online survey asking about their exposure to a range of ethical dilemmas and their knowledge of the clinical ethics service. Analysis used descriptive and inferential statistics. Ethical considerations: Ethical approval was granted from the hospital research committee. The survey was anonymous, and no identifying details of participants were collected. Results: Paediatric nurses experienced a wide range of ethical dilemmas frequently, both in the intensive care and general areas. Knowledge and use of the clinical ethics service was poor and the most frequent challenge for nurses in managing dilemmas was feeling powerless. Conclusion: There is a need to recognise the moral burden of ethical dilemmas for paediatric nurses in order to foster ethical sensitivity, and to provide adequate support to improve care and mitigate nursing moral distress. [ABSTRACT FROM AUTHOR]

The recently passed Privacy Legislation Amendment (Enforcement and Other Measures) Act 2022 (Cth) introduced important changes to the Australian Privacy Act 1988 (Cth) which increase penalties for serious and repeated interferences with privacy and strengthen the investigative and enforcement powers of the Information Commissioner. The amendments were made subsequent to a number of high profile data breaches and represent the first set of changes to the Privacy Act following the review of the Act commenced by the Attorney-General in October 2020. The submissions made to the review emphasized the need for more effective enforcement mechanisms to increase individuals' control over their personal information and as a form of deterrence. This article reviews the recent amendments to the Privacy Act and explains their effect. It comments upon the relevance of the amendments for health and medical data and other data collected in the context of healthcare, and refers to the Attorney-General's Department's review of the Privacy Act regarding other proposals relating to enforcement which have not as yet been put into effect in legislation. [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]

After a brief overview of ethical issues in an Australian context catalyzed by the current pandemic, this article focuses on data protection in the light of recent debates about COVID-19 data tracking in Australia and globally. This article looks at the issue of trust as a fundamental principle of effective and ethical COVID-safe measures undertaken by the government. Key to ensuring such trust are Habermasian participatory dialogs, which assume trust as a condition of authentic illocution, and an emphasis on short-term data capture. [ABSTRACT FROM AUTHOR]

This article examines the emergence of bioethics at Monash University and Australia during the late-1970s and early-1980s. Unlike bioethics in the USA, which was born a decade earlier during policy debates over human experimentation and withdrawal of treatment, bioethics in Australia initially emerged in the university context via interactions among research scientists working at the forefront of reproductive medicine and philosophers seeking to address issues of public concern. These interactions occurred in a rapidly changing university sector that was moving towards research translation and a new global knowledge economy. Drawing on oral histories with philosophers and medical scientists involved in these events, as well as archival materials, this article uses a co-productionist analytic lens to critically examine how changing institutional norms encouraged mutually beneficial interactions between philosophers and scientists, which shaped the emergence of a new and distinctive field of bioethics in Australia. [ABSTRACT FROM AUTHOR]

There is growing commitment to trauma-informed practice and increased recognition of risks associated with this work. However, the benefits of working with trauma-affected clients are under-studied. Drawing on interviews with sixty-three welfare, health and legal professionals in Australia, we consider the salutogenic dynamics of work with women with experiences of complex trauma. Participants articulated an ethics of care in which professionals ally with clients against abuse and violence as well as transactional neoliberal service models. We identify this approach to trauma work as a form of vicarious resistance that challenges dichotomies of vicarious trauma and resilience. [ABSTRACT FROM AUTHOR]