Journal of Bioethical Inquiry最新文献

In the near future, the electronic health record (EHR) is likely to include patients' genetic information, in addition to other clinical information and administrative data. This warrants some preparatory thought. Presently, in many jurisdictions, adolescents can self-access their EHR, as an acknowledgment of their relative autonomy in areas concerning their health. The foreseeable routine integration of genetic information into the EHR could result, inter alia, in adolescents' inadvertent exposure to misattributed parentage findings emerging from genetic investigations, creating clinical challenges and ethical difficulties. The article reviews policy on the underexplored area of sharing genetic (non-)relatedness information with adolescents. It then considers the clinical perspective of adolescents revealing genetic non-relatedness through the EHR. Next, the article comparatively investigates adolescents' health privacy and EHR-access laws and policies across several jurisdictions. After that, it analyses applicable ethical principles, such as minors' right to know their genetic origins; parents' (contentious) right to know that their child is genetically unrelated to them; the best interests of the child; and minors' autonomy. Finally, we offer an implementable model in which the minor makes an informed choice of consent option, genetic results are segregated from other EHR data, differential access is applied to genetic information; and pre-disclosure medical counselling for adolescent patients is mandated.

This paper argues for a re-balancing of decision-making power in health systems away from metrocentric and technocratic norms and a fundamental re-shaping towards democratic and participatory models of governance. These changes are understood as critical to the objective of improving healthcare access and delivery in regional, rural, and remote communities. In articulating this argument, we highlight the highly political nature of how we structure and govern healthcare delivery, which is imbued with value judgments. We critique currently dominant neo-liberal approaches to healthcare governance that frame the "voices" of local communities as optional inputs into the system, rather than active agents in decision-making processes. From health justice and spatial justice perspectives, public participation in governance may be an important factor to enable improved access to regional, rural, and remote health services and to promote community self-determination.

The Boldt scandal, one of the largest documented cases of research misconduct globally, caused significant institutional failures in research oversight. These systemic issues at Justus Liebig University in Gießen, Germany played a critical role in enabling widespread data falsification and ethical violations. Benno von Bormann, a former collaborator of Joachim Boldt involved in the misconduct, subsequently authored the semi-fictional novel Das Hospital, which depicts hierarchical power dynamics and ethical dilemmas within a hospital setting. This book review examines how von Bormann's narrative parallels the documented institutional weaknesses that facilitated the Boldt scandal. By comparing insights from the University of Gießen's investigation report, as summarized in publicly available sources, and the themes in Das Hospital, a unique interdisciplinary analysis of institutional responsibility is offered. The twin-pronged approach sheds light on the systemic conditions that may encourage unethical research behaviours, potentially leading to corresponding patterns of research withdrawals in areas and disciplines where such practices are notably prevalent. This study concludes by revisiting approaches to enhance transparency, accountability, and cultural changes in research management. This underscores the importance of combining literary analysis with factual examination of institutions to tackle ongoing issues in upholding research integrity.

Waiting time for elective surgery in public health systems has long been a focus for health institutions and governments. Such focus, and existing ethics literature, tends to hover at a policy or systems level. However, long waiting lists also create ethical challenges at the level of individuals' clinical practice. This project expands the focus of the elective surgery waiting list discussion from the macro systems level to the micro clinician level. We put forward a framework of values driving clinicians' ethical practice in this area, based on a literature review and iterative ethicist-led discussions with eighteen key surgical staff in one hospital network in metropolitan Melbourne, Australia. While sensitive to population-level values at play, clinicians' primary moral orientation was towards the individual patients they cared for. This orientation saw clinicians implement additional values in their practice including supporting patient autonomy through informed consent, maximizing benefits to individuals by considering patients holistically, minimizing harms to individual patients related to time spent waiting, and consistency of decision-making within teams and departments. By articulating values that can be translated into action within clinicians' sphere of agency, the framework aims to support ethical practice among surgical staff working within a constrained and imperfect system.

Intelligent assistive technology (IAT) is being developed to enable safe and autonomous ageing at home and is associated with supporting quality of life. These anticipated benefits must be balanced against potential unintended negative effects. This scoping review aims to identify and summarize the key ethical dimensions and frameworks discussed in the relevant scholarly literature. Furthermore, we examine whether the ethical dimensions identified can be derived from the four principles of bioethics, suggesting that, when properly specified, principlism could serve as a systematic framework for evaluating IAT. Thus, our review has two aims: identifying the ethical dimensions and frameworks currently discussed and investigating whether these frameworks can be structured according to the four principles or if additional principles are necessary. A systematic search across the databases PubMed, Web of Science, EMBASE, Belit, and PhilPapers, plus a manual search identified 535 publications, from which twenty-three studies were included. The results show twenty-one heterogeneous ethical dimensions, with similar matters considered across different categories. The review shows that key expectations and promises of developing and using IAT in this context mostly relate to the possibility of safely ageing at home and reducing healthcare costs. While assigning these ethical dimensions to the four principles of bioethics, it became clear that although all aspects discussed could be subcategorized, some ethical concerns might lose visibility or be inadequately addressed. We, therefore, conclude that the four principles generally provide a sufficient basis for evaluating these technologies.

As priority setting committees become commonplace in contemporary welfare states, it becomes increasingly important to understand how they operate. This article contributes to our understanding of contemporary priority setting by examining how the Danish Medicines Council (DMC) makes and justifies its decisions, as well as the role of different (and perhaps conflicting) concerns and values in these decisions. We conducted seventeen interviews with DMC members and observed three DMC meetings spanning five days. Firstly, we find that health-related effect is the most crucial factor in DMC members' recommendations of newly proposed medicines and that discussions of effects take precedence over other considerations in council deliberations. Secondly, we find that the ability of DMC members to adequately assess the effect of newly proposed medicines is often significantly limited by poor data quality and a lack of sufficient documentation, which shifts the DMC's task from making recommendations on an informed basis to providing estimated assessments of the expected effect. In these circumstances of uncertainty about effect, recommendations are influenced by considerations such as the age of patients and the rarity of the disease. This raises significant moral issues in which the DMC has no particular expertise.

Our experience in day-to-day medical practice suggests that the nature of the doctor-patient relationship (DPR) is considerably influenced by the attitudes of the individual patient and doctor. The DPR will also be significantly influenced by the social environment, including the healthcare system in which it develops. In addition, cultural influences on the DPR and its overriding ethical principles cannot be ignored. Moreover, the DPR cannot escape the influence of various coincidences. We argue that it is preferable that a doctor-seeking-the-Mean model be practiced, whereby doctors do not treat their patients in a uniform, normative, and skilful manner but rather try to achieve the Mean in key aspects of the DPR-which is highly individualized, changeable over time, and subject to social trends and chance. For Confucius, the Mean is a virtue that enables one to respond flexibly to changing circumstances and realize one's goals without excess or deficiency; it is an attempt to fully understand all the diverse and conflicting views and positions before making the highest quality decision that best suits one's need to achieve the goals at any given moment. We believe that the doctor-seeking-the-Mean model can fully fulfil the role of a platform for realizing the goals of healthcare.

Background: Despite recent regulatory reforms to improve the safety of cosmetic procedures in Australia, treatments involving non-ionizing radiation (NIR)-such as laser, intense pulsed light and radiofrequency-remain largely unregulated in most states and territories. Recent reviews have concluded that there is a lack of evidence of adverse effects, and insufficient evidence has also been cited as a barrier to regulatory reforms. We sought to characterize adverse effects from cosmetic treatments involving NIR reported in Australian media and to analyse associated regulatory themes.

Methods: We searched for Australian news media disseminated between 2008-2023 reporting adverse effects from cosmetic treatments involving non-ionizing radiation (NIR). Identified case reports were coded and analysed to explore adverse effects and associated regulatory insights.

Results: One hundred unique media reports were identified that described ninety-five cases. One in five involved permanent effects with burns and scarring most frequently reported (sixty-five and fifty-four cases respectively). Reports concerned women more than men (eighty vs eight cases), most commonly following laser (sixty cases) or IPL (twenty-nine cases) treatment and in non-clinical rather than clinical settings (sixty vs eighteen cases). Six practitioners collectively accounted for almost one third of cases. Significant regulatory gaps were identified, including insufficient mechanisms for addressing poor professional practice, and barriers to consumers seeking compensation including minimum injury thresholds and uninsured providers.

Conclusions: Media reports have documented cases of serious and permanent injuries following cosmetic NIR treatments in Australia. Nationally consistent regulations should be considered to ensure standards of care, protect consumers, and reduce barriers to redress.

The field of infant mental health has been met with some scepticism by those who question the role of the mental health professions in this space. In this paper I will consider a possible ethical objection to the extension of medical jurisdiction over infancy and parenting, informed by the critical tradition of medicalization studies. In part I of the paper, I will give particular attention to three potentially harmful consequences of medicalization on infants and their families-the expansion of medical social control, the individualization of human suffering, and the pathologization of human behaviour and variation. In part II, I will provide an ethical defence of infant mental health, addressing the objections raised by a medicalization-based critique. I will conclude in part III that medicalization is not always bad for infants and their families, and that, in the case of infant mental health, there is a mutually reinforcing relationship between medicalization and infant rights claims to the fundamental conditions for pursuing a good life.