Australian public perspectives on genomic newborn screening: which conditions should be included?

BACKGROUND: Implementing genomic sequencing into newborn screening programs allows for significant expansion in the number and scope of conditions detected. We sought to explore public preferences and perspectives on which conditions to include in genomic newborn screening (gNBS). METHODS: We recruited English-speaking members of the Australian public over 18 years of age, using social media, and invited them to participate in online focus groups. RESULTS: Seventy-five members of the public aged 23-72 participated in one of fifteen focus groups. Participants agreed that if prioritisation of conditions was necessary, childhood-onset conditions were more important to include than later-onset conditions. Despite the purpose of the focus groups being to elicit public preferences, participants wanted to defer to others, such as health professionals or those with a lived experience of each condition, to make decisions about which conditions to include. Many participants saw benefit in including conditions with no available treatment. Participants agreed that gNBS should be fully publicly funded. CONCLUSION: How many and which conditions are included in a gNBS program will be a complex decision requiring detailed assessment of benefits and costs alongside public and professional engagement. Our study provides support for implementing gNBS for treatable childhood-onset conditions.

The ethics of artificial intelligence systems in healthcare and medicine: from a local to a global perspective, and back.

Artificial intelligence systems (ai-systems) (e.g. machine learning, generative artificial intelligence), in healthcare and medicine, have been received with hopes of better care quality, more efficiency, lower care costs, etc. Simultaneously, these systems have been met with reservations regarding their impacts on stakeholders' privacy, on changing power dynamics, on systemic biases, etc. Fortunately, healthcare and medicine have been guided by a multitude of ethical principles, frameworks, or approaches, which also guide the use of ai-systems in healthcare and medicine, in one form or another. Nevertheless, in this article, I argue that most of these approaches are inspired by a local isolationist view on ai-systems, here exemplified by the principlist approach. Despite positive contributions to laying out the ethical landscape of ai-systems in healthcare and medicine, such ethics approaches are too focused on a specific local healthcare and medical setting, be it a particular care relationship, a particular care organisation, or a particular society or region. By doing so, they lose sight of the global impacts ai-systems have, especially environmental impacts and related social impacts, such as increased health risks. To meet this gap, this article presents a global approach to the ethics of ai-systems in healthcare and medicine which consists of five levels of ethical impacts and analysis: individual-relational, organisational, societal, global, and historical. As such, this global approach incorporates the local isolationist view by integrating it in a wider landscape of ethical consideration so to ensure ai-systems meet the needs of everyone everywhere.

Parental request for familial carrier testing in early childhood: The genetic counseling perspective.

Professional guidelines generally caution against carrier testing in minors, though prior research indicates parents request and providers sometimes facilitate testing for unaffected siblings of a child affected by a genetic disorder. We investigated the perspectives of genetic counselors in North America regarding carrier testing prior to adolescence. Practicing genetic counselors (n = 177) responded to an electronic survey assessing their willingness to facilitate testing in four hypothetical scenarios and their evaluation of parental motivations. Participants did not find parental arguments for testing persuasive, and most were unwilling to facilitate carrier testing in children. A significant interaction effect indicated the presence of nonactionable carrier-associated health risks in adulthood made participants significantly less hesitant when the mode of inheritance was X-linked. Participants considered parental motivations that center the child's interests as significantly more persuasive. This study suggests genetic counselors are resistant to carrier testing for familial disorders in young children and tend to align with current guidelines, yet they recognize nuance in various cases. Further investigation into this topic is warranted to support genetic counselors facing these requests as the ethics of pediatric carrier testing continues to be debated.

Patient vulnerability in stereotactic arrhythmia radioablation (STAR): a preliminary ethical appraisal from the STOPSTORM.eu consortium.

This preliminary ethical appraisal from the STOPSTORM.eu consortium is meant to raise critical points that clinicians administering stereotactic arrhythmia radioablation should consider to meet the highest standards in medical ethics and thus promote quality of life of patients recruited for radiotherapy treatments at a stage in which they experience a significant degree of vulnerability.

Refining research on access to gynecologic cancer care: The DIMeS framework.

BACKGROUND: Despite its importance, there is no consensus definition of access to care, and several fundamental philosophical questions about access remain unanswered. Lack of clarity impedes interventional research designed to develop and test methods of correcting barriers to access. To help remedy this problem, we propose a conceptual framework to help guide empirical research about access to gynecologic cancer care. METHODS: Relevant philosophical and empirical literature was reviewed and analyzed to highlight key elements needed to refine research on access to care. RESULTS: The DIMeS framework involves 1) choice and justification of a Definition of access to cancer care that will guide research; 2) Identification of essential gynecologic cancer care services for which access disparities are ethically unacceptable; 3) quantitative MEasurement of specific parameters that affect access to care; and 4) Selection of a target threshold on measured parameters above which access is acceptable. CONCLUSIONS: The DIMeS framework provides clarity and reproducibility for investigators seeking to develop and test interventions to improve cancer health equity. This framework should be considered for use in research on access to gynecologic cancer care.

Biliary atresia in Uganda: Current ethical challenges and advancement of public policy.

Biliary atresia is a progressive cholangiopathy in neonates, which often results in liver failure. In high-income countries, initial treatment requires prompt diagnosis followed by Kasai portoenterostomy. For those with a late diagnosis, or those in whom Kasai portoenterostomy fails, liver transplantation is the only lifesaving treatment. Unfortunately, in low- and middle-income countries, timely diagnosis is a challenge and liver transplantation is rarely accessible. Here, we discuss the ethical dilemmas surrounding treatment of babies with biliary atresia in Uganda. Issues that require careful consideration include: risk of catastrophic health expenditure to families, ethical dilemmas of transplant tourism, medical risks of maintaining the transplant in a low-resourced health system, and difficult decisions encountered by the surgeon caring for these patients. Four distinct models of the patient-physician relationship are applied to biliary atresia in Uganda. These models describe differences in patient and physician roles, and patient values and autonomy. Solid organ transplantation is a rapidly evolving segment of healthcare in Uganda and ongoing policy advancements may shift ethical considerations in the future.

Ethical approval for controlled human infectious model clinical trial protocols - A workshop report.

Controlled Human Infectious Model studies (CHIM) involve deliberately exposing volunteers to pathogens. To discuss ethical issues related to CHIM, the European Vaccine Initiative and the International Alliance for Biological Standardization organised the workshop "Ethical Approval for CHIM Clinical Trial Protocols", which took place on May 30-31, 2023, in Brussels, Belgium. The event allowed CHIM researchers, regulators, ethics committee (EC) members, and ethicists to examine the ethical criteria for CHIM and the role(s) of CHIM in pharmaceutical development. The discussions led to several recommendations, including continued assurance that routine ethical requirements are met, assurance that participants are well-informed, and that preparation of study documents must be both ethically and scientifically sound from an early stage. Study applications must clearly state the rationale for the challenge compared to alternative study designs. ECs need to have clear guidance and procedures for evaluating social value and assessing third-party risks. Among other things, public trust in research requires minimisation of harm to healthy volunteers and third-party risk. Other important considerations include appropriate stakeholder engagement, public education, and access to health care for participants after the study.

Values-Based Medicine Is an Ethical Concept for Implementing the Ethical Principles in Daily Practice.

Values-based medicine (VsBM) is an ethical concept, and bioethical framework has been developed to ensure that medical ethics and values are implemented, pervasive, and powerful parameters influencing decisions about health, clinical practice, teaching, medical industry, career development, malpractice, and research. Neurosurgeons tend to adopt ethics according to their own values and to what they see and learn from teachers. Neurosurgeons, in general, are aware about ethical codes and the patient's rights. However, the philosophy, concept, and principles of medical ethics are rarely included in the training programs or in training courses. The impact of implementing, observing the medical ethics and the patients' value and culture on the course, and outcome of patients' management should not underestimate. The main principles of medical ethics are autonomy, beneficence, nonmaleficence, justice, dignity, and honesty, which should be strictly observed in every step of medical practice, research, teaching, and publication. Evidence-based medicine has been popularized in the last 40-50 years in order to raise up the standard of medical practice. Medical ethics and values have been associated with the medical practice for thousands of years since patients felt a need for treatment. There is no conflict between evidence-based medicine and values-based medicine, as a medical practice should always be performed within a frame of ethics and respect for patients' values. Observing the principles of values-based medicine became very relevant as multicultural societies are dominant in some countries and hospitals in different corners of the world.

How Ohio public library systems respond to opioid-related substance use: a descriptive analysis of survey results.

BACKGROUND: Public libraries in the United States have experienced increases in opioid-related substance use in their communities and on their premises. This includes fatal and non-fatal overdose events. Some libraries have adopted response measures in their branches to deter substance use or prevent overdose. A small number of libraries around the nation have decided to stock the opioid antagonist naloxone (Narcan) for staff to administer to patrons who experience overdose. This response measure has generated extensive media attention. Although Ohio ranks fourth in age-adjusted drug mortality rate in the United States, there has been no investigation of whether Ohio libraries are observing opioid-related transactions, consumption, and/or overdose events, or which measures they have adopted in response to these activities. We conducted a multimethod survey with Ohio public library directors to identify the response measures they have adopted. We present descriptive findings from the quantitative and qualitative items in our survey. METHODS: We conducted a cross-sectional 54-item multimethod survey of public library system directors (one per system) in Ohio. Directors of each of Ohio's public library systems were invited to participate via email. RESULTS: Of 251 library systems, 56 responded (22.3% response rate), with 34 respondents (60.7%) indicating awareness of opioid-related transactions, consumption, and/or overdose on their premises. Most (n = 43, 76.8%) did not stock naloxone in their buildings. Over half (n = 34, 60.7%) reported implementing one or more non-naloxone response measures. These measures focus on improving security for staff and patrons, deterring opioid-related transactions (purchases and exchanges) and consumption, and providing educational events on substance use. Nearly half (n = 25, 47.2%) partner with community organizations to provide opioid response measures. A similar proportion reported adequate funding to respond to opioid-related substance use (n = 23, 45.1%), and most (n = 38, 74.5%) reported adequate support from their boards and communities. Few respondents have implemented evaluations of their response measures. CONCLUSIONS: Ohio public libraries are responding to evidence of opioid-related transactions, consumption, and/or overdose on their premises with a range of measures that focus on substance use prevention and deterrence. Most Ohio library systems do not stock naloxone. Respondents indicated they prefer to call 911 and let first responders handle overdose events. The majority of respondents indicated their library systems have political capacity to respond to evidence of opioid-related substance use on their premises, but have limited operational and functional capacity. Findings suggest the need to revisit assumptions that public libraries are willing to stock naloxone to respond to overdose events, and that libraries have the resources to respond robustly to opioid-related transactions, consumption, and/or overdose on their premises.

Proposed Principles for International Bioethics Conferencing: Anti-Discriminatory, Global, and Inclusive.

This paper opens a critical conversation about the ethics of international bioethics conferencing and proposes principles that commit to being anti-discriminatory, global, and inclusive. We launch this conversation in the Section, Case Study, with a case example involving the International Association of Bioethics' (IAB's) selection of Qatar to host the 2024 World Congress of Bioethics. IAB's choice of Qatar sparked controversy. We believe it also may reveal deeper issues of Islamophobia in bioethics. The Section, Principles for International Bioethics Conferencing, sets forth and defends proposed principles for international bioethics conferencing. The Section, Applying Principles to Site Selection applies the proposed principles to the case example. The Section, Applying Principles Beyond Site Selection addresses other applications of the proposed principles. The Section, Objections responds to objections. We close (in the Section, Conclusion) by calling for a wider discussion of our proposed principles. One-Sentence Capsule Summary: How should bioethicists navigate the ethics of global bioethics conferencing?

The Bioethics of Environmental Injustice: Ethical, Legal, and Clinical Implications of Unhealthy Environments.

Environmental health remains a niche topic in bioethics, despite being a prominent social determinant of health. In this paper we argue that if bioethicists are to take the project of health justice as a serious one, then we have to address environmental injustices and the threats they pose to our bioethics principles, health equity, and clinical care. To do this, we lay out three arguments supporting prioritizing environmental health in bioethics based on bioethics principles including a commitment to vulnerable populations and justice. We also highlight and advocate for environmental law efforts that align with these priorities, focusing specifically on the need for a right to a healthy environment. Our intention is to draw attention to the legal and ethical concepts that underlie the importance of a healthy environment, and urge bioethicists to prioritize both legal and ethical advocacy against environmental injustices in their practice.

Establishing and Defining an Approach to Climate Conscious Clinical Medical Ethics.

An anthropocentric scope for clinical medical ethics (CME) has largely separated this area of bioethics from environmental concerns. In this article, we first identify and reconcile the ethical issues imposed on CME by climate change including the dispersion of related causes and effects, the transdisciplinary and transhuman nature of climate change, and the historic divorce of CME from the environment. We then establish how several moral theories undergirding modern CME, such as virtue ethics, feminist ethics, and several theories of justice, promote both a flourishing of human medical practice and the environment. We conclude by defining an expanded the scope of CME as inclusive of not only patients, families, physicians, and other health professionals but other humans, non-humans, and their shared environment. We then apply this scope and theory to a widely used framework for applying CME, the Four Topics model, to construct a climate conscious approach to CME.

The myth of translational bioethics.

In recent years, the case has been made for special attention to be paid to a branch of research in the field of bioethics called 'translational bioethics'. In this paper, we start by considering some of the assumptions that those advancing translational approaches to bioethics make about bioethics and compare them to the reality of bioethics as an academic field. We move on to explain how those who make this case, implicitly or explicitly, for translational bioethics go awry because of how they understand the 'gap' between bioethical inquiry and practical settings that requires bridging. We consider three interpretations of this 'translation gap' in bioethics: (i) the gap between theory and practice, (ii) the gap between the force of normative claims and practical contextual realities and (iii) the gap between relevance or applicability to practice and actual application or implementation in practice. In each case, we show how a proper understanding of the nature of the academic field of bioethics undermines how these gaps have been formulated, and how any need for talk of 'translational bioethics' is removed.

Developing translational bioethics-Suggestions for ways forward.

This paper will take as its starting point the premise that developing translational bioethics is a worthwhile endeavour. I will develop an account of translational bioethics and discuss what implications this would have for the wider discipline of bioethics and argue that this would be a useful development for bioethics. The paper will conduct a form of 'translational meta-bioethics analysis', in the words of Baerøe. I will argue that if we are serious about instituting translational bioethics, then it will need to look and be organised in a very different way from current bioethics research, this will be a radically different form of bioethics from what we currently have. In this paper I will sketch what translational bioethics might look like. My proposal here is not that translational bioethics should supplant existing ways of doing bioethics, but rather that it should be an addition to it, another subdiscipline of bioethics.

Another "turn" in bioethics? A plea for methodological continuity.

A growing trend in bioethics highlights the importance of using big data science methods to advance normative insight. This has been called the "digital turn" in bioethics by Salloch and Ursin. Automated data processing can, for example, detect significant patterns of correlation that have escaped the attention of human scholars. Although we agree that such technological innovations could bolster existing methods in empirical bioethics (EB), we argue that it should not be conceptualized as a new turn but rather as a revivification, and possibly an amplification of entrenched debates in EB. We begin by highlighting some convergences between EB and digital bioethics that Salloch and Ursin seem to categorize as fundamental differences and end up with elaborating on some risks related to the integration of empirical findings with normative (philosophical) analysis in the digitalization trend.

Translational or translationable? A call for ethno-immersion in (empirical) bioethics research.

The shift towards "empirical bioethics" was largely triggered by a recognition that stakeholders' views and experiences are vital in ethical analysis where one hopes to produce practicable recommendations. Such perspectives can provide a rich resource in bioethics scholarship, perhaps challenging the researcher's perspective. However, overreliance on a picture painted by a group of research participants-or on pre-existing literature in that field-can lead to a biased view of a given context, as the subjectivity of data generated in these ways cannot (and should not wholly) be escaped. In response, we propose the implementation of a complementary approach of ethno-immersion in bioethics research. By positioning oneself in the context being researched, the researcher can better understand the realities of that context. The researcher's understanding will, naturally, be subjective too. However, it will act as a better developed and more informed outsider view, when considering the picture painted by participants and previous studies, thus enabling the researcher to introduce more nuance when analysing data. We introduce this approach after examining what we call the context detachment problem, whereby some bioethics scholarship-empirical or otherwise-fails to reflect the reality of the healthcare setting it concerns. Our proposed ethno-immersion (which differs from formal ethnography) is then explored as a response, highlighting its benefits, and answering the question of timing within a research project. Finally, we reflect on the applicability of our proposal to non-empirical bioethics scholarship, concluding that it remains important but may require some adjustments.

The role of the concept of solidarity for just distribution of bioethical goods in the international area.

This analysis investigates whether solidarity is an appropriate concept for thinking about justifications for a just distribution of bioethical goods in the international arena. This will be explored by looking at the national origins of the idea of justifying solidarity in the form of the health care that welfare states offer. Following that, 'life' and 'health' will be placed within a philosophical context by focusing on the main arguments of John Rawls and Amartya Sen and the role of solidarity in these two theories of justice will be analysed. It will be shown that these theories assume that solidarity is not a prerequisite for just international structures. Finally, the possibility will be discussed, that there is a degree of uncertainty surrounding justifications for fair distribution in the international context that can result when the concepts of solidarity and justice are handled imprecisely.

Translational bioethics as a two-way street. Developing clinical ethics support instruments with and for healthcare practitioners.

This article discusses an approach to translational bioethics (TB) that is concerned with the adaptation-or 'translation'-of concepts, theories and methods from bioethics to practical contexts, in order to support 'non-bioethicists', such as researchers and healthcare practitioners, in dealing with their ethical issues themselves. Specifically, it goes into the participatory development of clinical ethics support (CES) instruments that respond to the needs and wishes of healthcare practitioners and that are tailored to the specific care contexts in which they are to be used. The theoretical underpinnings of this participatory approach to TB are found in hermeneutic ethics and pragmatism. As an example, the development of CURA, a low-threshold CES instrument for healthcare professionals in palliative care, is discussed. From this example, it becomes clear that TB is a two-way street. Practice may be improved by means of CES that is effectively tailored to specific end users and care contexts. The other way around, ethical theory may be enriched by means of the insights gained from engaging with practice in developing CES in a process of co-creation. TB is also a two-way street in the sense that it requires collaboration and commitment of both bioethicists and practitioners, who engage in a process of mutual learning. However, substantial challenges remain. For instance, is there a limit to the extent to which a method of moral reasoning can be adapted in order to meet the constraints of a given healthcare setting? Who is to decide, the bioethicist or the practitioners?

How moral bioenhancement affects perceived praiseworthiness.

Psychological literature indicates that actions performed with the assistance of cognition-enhancing biomedical technologies are often deemed to be less praiseworthy than similar actions performed without such assistance. This study examines (i) whether this result extends to the bioenhancement of moral capacities, and (ii) if so, what explains the effect of moral bioenhancement on perceived praiseworthiness. The findings indicate that actions facilitated by morally bioenhanced individuals are considered less deserving of praise than similar actions facilitated by 'traditional' moral enhancement-for example, moral self-education. This diminished praise does not seem to be driven by an aversion to (moral) bioenhancement per se. Instead, it appears to be primarily attributable to a perceived lack of effort exerted by bioenhanced individuals in the course of their moral enhancement. Our findings advance the philosophical discourse on the foundations of praise in the context of moral bioenhancement by elucidating the empirical basis underlying some assumptions commonly employed to argue for or against the permissibility of moral bioenhancement.

Artificial intelligence in clinical decision-making: Rethinking personal moral responsibility.

Artificially intelligent systems (AISs) are being created by software developing companies (SDCs) to influence clinical decision-making. Historically, clinicians have led healthcare decision-making, and the introduction of AISs makes SDCs novel actors in the clinical decision-making space. Although these AISs are intended to influence a clinician's decision-making, SDCs have been clear that clinicians are in fact the final decision-makers in clinical care, and that AISs can only inform their decisions. As such, the default position is that clinicians should hold responsibility for the outcomes of the use of AISs. This is not the case when an AIS has influenced a clinician's judgement and their subsequent decision. In this paper, we argue that this is an imbalanced and unjust position, and that careful thought needs to go into how personal moral responsibility for the use of AISs in clinical decision-making should be attributed. This paper employs and examines the difference between prospective and retrospective responsibility and considers foreseeability as key in determining how personal moral responsibility can be justly attributed. This leads us to the view that moral responsibility for the outcomes of using AISs in healthcare ought to be shared by the clinical users and SDCs.