Ethical issues in the application of genome-wide association studies to US military recruitment and personnel assignments.

Genome-wide association studies seek to associate an organism's genotypes with phenotypes. The goal of such research is to identify specific genetic variants that may be used to predict an individual's risk for a specific physical or mental disease. Recently, it has been recommended that policymakers in the USA should employ genomic surveillance so that it can be used for initial military personnel selection and personnel assignments. However, such a proposal highlights the necessity of subjecting such recommendations to rigorous ethical analysis, including concerns regarding recruitment, transparency and the return of genetic results.

An ethical assessment of professional opinions on concerns, chances, and limitations of the implementation of an artificial intelligence-based technology into the geriatric patient treatment and continuity of care.

With the introduction of an artificial intelligence-based dashboard into the clinic, the project SURGE-Ahead responds to the importance of improving perioperative geriatric patient treatment and continuity of care. The use of artificial intelligence to process and analyze data automatically, aims at an evidence-based evaluation of the patient's health condition and recommending treatment options. However, its development and introduction raise ethical questions. To ascertain professional perspectives on the clinical use of the dashboard, we have conducted 19 semi-structured qualitative interviews with head physicians, computer scientists, jurists, and ethicists. The application of a qualitative content analysis and thematic analysis enabled the detection of main ethical concerns, chances, and limitations. These ethical considerations were categorized: changes of the patient-physician relationship and the current social reality are expected, causing de-skilling and an active participation of the artificial intelligence. The interviewees anticipated a redistribution of human resources, time, knowledge, and experiences as well as expenses and financing. Concerns of privacy, accuracy, transparency, and explainability were stated, and an insufficient data basis, an intensifying of existing inequalities and systematic discrimination considering a fair access emphasized. Concluding, the patient-physician relationship, social reality, redistribution of resources, fair access, as well as data-related aspects of the artificial intelligence-based system could conflict with the ethical principles of autonomy, non-maleficence, beneficence, and social justice. To respond to these ethical concerns, a responsible use of the dashboard and a critical verification of therapy suggestions is mandatory, and the application limited by questions at the end of life and taking life-changing decisions.

Associations between knowledge of health issues and health care satisfaction and propensity to complain: a cross-sectional survey of adult men in Denmark.

OBJECTIVES: The objective of this study was to investigate associations between knowledge of health issues and healthcare satisfaction and propensity to complain including the association between knowledge and greater patient involvement. DESIGN: The present study is a secondary analysis of a larger cross-sectional case vignette survey. SETTING: Survey conducted in adult Danish men. PARTICIPANTS: Participants included 6755 men aged 45-70 years. INTERVENTIONS: Participants responded to a survey with scenarios illustrating prostate-specific antigen (PSA) testing and different information provision. PRIMARY AND SECONDARY OUTCOME MEASURES: Using Likert scales (scored 1-5), participants rated their satisfaction with the care described and their inclination to complain and responded to a short quiz (scored 0-3) assessing their knowledge about the PSA test. RESULTS: Satisfaction with healthcare increased with better quiz performance (Likert difference 0.13 (95% CI .07 to 0.20), p <0.001, totally correct vs totally incorrect responders) and correspondingly, the desire to complain significantly decreased (Likert difference -0.34 (95% CI 0.40 to -0.27), p <0.001). Respondents with higher education performed better (mean quiz score difference 0.59 (95% CI 0.50 to 0.67), p <0.001, most educated vs least educated). Responders who received information about the PSA test generally performed better (quiz score difference 0.41 (95% CI 0.35 to 0.47), p<0.001, neutral vs no information). Overestimation of PSA merits was more common than underestimation (7.9% vs 3.8%). CONCLUSIONS: Mens' knowledge of the benefits of screening varies with education, predicts satisfaction with care and the desire to complain, and may be improved through greater involvement in decision-making.

From ownership to custodianship of tumor biopsy tissue in genomic testing: a mixed methods study of patient views.

Tumor mutation profiling (MP) is often conducted on tissue from biopsies conducted for clinical purposes (diagnostic tissue). We aimed to explore the views of patients with cancer on who should own tumor biopsy tissue, pay for its storage, and decide on its future use; and determine their attitudes to and predictors of undergoing additional biopsies if required for research purposes. In this mixed methods, cross-sectional study, patients with advanced solid cancers enrolled in the Molecular Screening and Therapeutics Program (n = 397) completed a questionnaire prior to undergoing MP (n = 356/397). A subset (n = 23) also completed a qualitative interview. Fifty percent of participants believed they and/or relatives should own and control access to diagnostic tissue. Most (65.5%) believed the government should pay for tissue preparation. Qualitative themes included (1) custodianship of diagnostic tissue, (2) changing value of tissue across time and between cultures, (3) equity regarding payment, and (4) cost-benefit considerations in deciding on additional biopsies. Policy and regulation should consider patient perspectives. Extension of publicly funded health care to include tissue retrieval for clinical trials should be considered.

Using curiosity to render the invisible, visible.

Virtues commonly associated with physicians and other healthcare professionals include empathy, respect, kindness, compassion, trustworthiness, and many more. Building upon the work of Bortolloti, Murphy-Hollies, and others, I suggest that curiosity as a virtue has an integral role to play in healthcare, namely, in helping to make those who are invisible, visible. Practicing the virtue of curiosity enables one to engage with and explore the experiences of patients and contributes toward building a physician-patient relationship of trust. As the perspectives and experiences of patients can be too often dismissed or lost within medical settings, curiosity can allow physicians to deeply know their patients, and thus provide better care. However, caution must be exercised so as to not to venture into inappropriate curiosity, where questions are asked for improper reasons or to help satisfy the personal interest of physicians. Finally, I sketch out two cases-on chronic pain and on vaccine hesitancy-to illustrate where curiosity can play a valuable role.

Rhetoric of research: a call for renaming the clinical research partnership.

OBJECTIVE: Research cannot advance without the voluntary participation of human participants. SUMMARY OF ARGUMENTS: Full participation of research participants is often restrained by the traditional research framework, which relegates them to a predefined participant role and allows them only quasi-scripted opportunities to contribute to research processes and outcomes. Terms commonly used to refer to research participants do not reflect their significant role or send a clear message about their value. The authors propose a shift from 'patient participant' to 'participant partner.' Recognition of the true partnership between the participant and the research team, from the consent process to the trial's end, will encourage and enable fuller participation. CONCLUSION: Changing the rhetoric of research in the labelling of research participants will require dialogue. 'Respect for persons' demands it, and the research process will be better for it.

The public-private research ecosystem in the genome editing era.

Biomedical research in the US has long been conducted in a public-private (PP) "ecosystem." Today, especially with gene therapies and genome editing-based medicine, publicly funded researchers frequently hand off their research to the private sector for clinical development, often to small, venture capital-funded startups in which they have a financial interest. This trend raises ethical questions about conflicts of interest, effectiveness of regulatory oversight, and justice in therapy access, that we are addressing in a multi-year, multidisciplinary study of the evolving governance of genome editing. This paper draws on interviews with scientists working across the PP divide and their private sector business and financial partners. We find little concern about potential ethical dilemmas, with two exceptions expressed by public sector scientists: concerns about inequitable access to treatments due to disparities in wealth, ethnicity, and health insurance benefits; and about whether their private collaborators' profit motive may affect their research objectives.

Toward Transparency and Trust: Assessing and Addressing Key Ethical Concerns in Normothermic Regional Perfusion.

Normothermic Regional Perfusion, or NRP, is a method of donated organ reperfusion using cardiopulmonary bypass or a modified extracorporeal membrane oxygenation (ECMO) circuit after circulatory death while leaving organs in the dead donor's corpse. Despite its potential, several key ethical issues remain unaddressed by this technology.

Is Cryocide an Ethically Feasible Alternative to Euthanasia?

While some countries are moving toward legalization, euthanasia is still criticized on various fronts. Most importantly, it is considered a violation of the medical ethics principle of non-maleficence, because it actively seeks a patient's death. But, medical ethicists should consider an ethical alternative to euthanasia. In this article, we defend cryocide as one such alternative. Under this procedure, with the consent of terminally-ill patients, their clinical death is induced, in order to prevent the further advance of their brain's deterioration. Their body is then cryogenically preserved, in the hope that in the future, there will be a technology to reanimate it. This prospect is ethically distinct from euthanasia if a different criterion of death is assumed. In the information-theoretic criterion of death, a person is not considered dead when brain and cardiopulmonary functions cease, but rather, when information constituting psychology and memory is lost.

The Ethical Stewardship of Artificial Intelligence in Chronic Pain and Headache: A Narrative Review.

PURPOSE OF REVIEW: As artificial intelligence (AI) and machine learning (ML) are becoming more pervasive in medicine, understanding their ethical considerations for chronic pain and headache management is crucial for optimizing their safety. RECENT FINDINGS: We reviewed thirty-eight editorial and original research articles published between 2018 and 2023, focusing on the application of AI and ML to chronic pain or headache. The core medical principles of beneficence, non-maleficence, autonomy, and justice constituted the evaluation framework. The AI applications addressed topics such as pain intensity prediction, diagnostic aides, risk assessment for medication misuse, empowering patients to self-manage their conditions, and optimizing access to care. Virtually all AI applications aligned both positively and negatively with specific medical ethics principles. This review highlights the potential of AI to enhance patient outcomes and physicians' experiences in managing chronic pain and headache. We emphasize the importance of carefully considering the advantages, disadvantages, and unintended consequences of utilizing AI tools in chronic pain and headache, and propose the four core principles of medical ethics as an evaluation framework.

Moral distress among physicians in Norway: a longitudinal study.

OBJECTIVES: To explore and compare physicians' reported moral distress in 2004 and 2021 and identify factors that could be related to these responses. DESIGN: Longitudinal survey. SETTING: Data were gathered from the Norwegian Physician Panel Study, a representative sample of Norwegian physicians, conducted in 2004 and 2021. PARTICIPANTS: 1499 physicians in 2004 and 2316 physicians in 2021. MAIN OUTCOME MEASURES: The same survey instrument was used to measure change in moral distress from 2004 to 2021. Logistic regression analyses examined the role of gender, age and place of work. RESULTS: Response rates were 67% (1004/1499) in 2004 and 71% (1639/2316) in 2021. That patient care is deprived due to time constraints is the most severe dimension of moral distress among physicians, and it has increased as 68.3% reported this 'somewhat' or 'very morally distressing' in 2004 compared with 75.1% in 2021. Moral distress also increased concerning that patients who 'cry the loudest' get better and faster treatment than others. Moral distress was reduced on statements about long waiting times, treatment not provided due to economic limitations, deprioritisation of older patients and acting against one's conscience. Women reported higher moral distress than men at both time points, and there were significant gender differences for six statements in 2021 and one in 2004. Age and workplace influenced reported moral distress, though not consistently for all statements. CONCLUSION: In 2004 and 2021 physicians' moral distress related to scarcity of time or unfair distribution of resources was high. Moral distress associated with resource scarcity and acting against one's conscience decreased, which might indicate improvements in the healthcare system. On the other hand, it might suggest that physicians have reduced their ideals or expectations or are morally fatigued.

Medical Interpreting Services for Refugees in Canada: Current State of Practice and Considerations in Promoting this Essential Human Right for All.

Language barriers, specifically among refugees, pose significant challenges to delivering quality healthcare in Canada. While the COVID-19 pandemic accelerated the emergence and development of innovative alternatives such as telephone-based and video-conferencing medical interpreting services and AI tools, access remains uneven across Canada. This comprehensive analysis highlights the absence of a cohesive national strategy, reflected in diverse funding models employed across provinces and territories, with gaps and disparities in access to medical interpreting services. Advocating for medical interpreting, both as a moral imperative and a prudent investment, this article draws from human rights principles and ethical considerations, justified in national and international guidelines, charters, codes and regulations. Substantiated by a cost-benefit analysis, it emphasizes that medical interpreting enhances healthcare quality and preserves patient autonomy. Additionally, this article illuminates decision-making processes for utilizing interpreting services; recognizing the pivotal roles of clinicians, interpreters, patients and caregivers within the care circle; appreciating intersectional considerations such as gender, culture and age, underscoring the importance of a collaborative approach. Finally, it provides recommendations at provider, organizational and system levels to ensure equitable access to this right and to promote the health and well-being of refugees and other individuals facing language barriers within Canada's healthcare system.

End-of-Life Care of a Patient With Pontine Stroke and Prolonged Hospitalization: A Case Report.

Stroke is a leading cause of long-term disability in the United States that can lead to loss of function and consciousness. With the abrupt onset of the brain insult, end-of-life care discussions are an important attribute of respecting the patient's best wishes and upholding the ethical principles of autonomy, beneficence, nonmaleficence, fidelity, and justice. Furthermore, the topic of extending life support to individuals with poor prognostic factors of improvement in quality of life and functional recovery has been a continued topic of debate due to a multitude of factors, including the wishes of the patient, familial emotions, cultural beliefs, and religious influences. This case involves a patient who suffered from a left pontine stroke, necessitating multiple end-of-life care conversations. Despite no clinical improvement for several years, the patient required prolonged hospitalization and ongoing ventilator use.

Ethical Incorporation of Artificial Intelligence into Neurosurgery: A Generative Pretrained Transformer Chatbot-Based, Human-Modified Approach.

INTRODUCTION: Artificial intelligence (AI) has become increasingly used in neurosurgery. Generative pretrained transformers (GPTs) have been of particular interest. However, ethical concerns regarding the incorporation of AI into the field remain underexplored. We delineate key ethical considerations using a novel GPT-based, human-modified approach, synthesize the most common considerations, and present an ethical framework for the involvement of AI in neurosurgery. METHODS: GPT-4, ChatGPT, Bing Chat/Copilot, You, Perplexity.ai, and Google Bard were queried with the prompt "How can artificial intelligence be ethically incorporated into neurosurgery?". Then, a layered GPT-based thematic analysis was performed. The authors synthesized the results into considerations for the ethical incorporation of AI into neurosurgery. Separate Pareto analyses with 20% threshold and 10% threshold were conducted to determine salient themes. The authors refined these salient themes. RESULTS: Twelve key ethical considerations focusing on stakeholders, clinical implementation, and governance were identified. Refinement of the Pareto analysis of the top 20% most salient themes in the aggregated GPT outputs yielded 10 key considerations. Additionally, from the top 10% most salient themes, 5 considerations were retrieved. An ethical framework for the use of AI in neurosurgery was developed. CONCLUSIONS: It is critical to address the ethical considerations associated with the use of AI in neurosurgery. The framework described in this manuscript may facilitate the integration of AI into neurosurgery, benefitting both patients and neurosurgeons alike. We urge neurosurgeons to use AI only for validated purposes and caution against automatic adoption of its outputs without neurosurgeon interpretation.

Protocol for the development of the Chatbot Assessment Reporting Tool (CHART) for clinical advice.

INTRODUCTION: Large language model (LLM)-linked chatbots are being increasingly applied in healthcare due to their impressive functionality and public availability. Studies have assessed the ability of LLM-linked chatbots to provide accurate clinical advice. However, the methods applied in these Chatbot Assessment Studies are inconsistent due to the lack of reporting standards available, which obscures the interpretation of their study findings. This protocol outlines the development of the Chatbot Assessment Reporting Tool (CHART) reporting guideline. METHODS AND ANALYSIS: The development of the CHART reporting guideline will consist of three phases, led by the Steering Committee. During phase one, the team will identify relevant reporting guidelines with artificial intelligence extensions that are published or in development by searching preprint servers, protocol databases, and the Enhancing the Quality and Transparency of health research Network. During phase two, we will conduct a scoping review to identify studies that have addressed the performance of LLM-linked chatbots in summarising evidence and providing clinical advice. The Steering Committee will identify methodology used in previous Chatbot Assessment Studies. Finally, the study team will use checklist items from prior reporting guidelines and findings from the scoping review to develop a draft reporting checklist. We will then perform a Delphi consensus and host two synchronous consensus meetings with an international, multidisciplinary group of stakeholders to refine reporting checklist items and develop a flow diagram. ETHICS AND DISSEMINATION: We will publish the final CHART reporting guideline in peer-reviewed journals and will present findings at peer-reviewed meetings. Ethical approval was submitted to the Hamilton Integrated Research Ethics Board and deemed "not required" in accordance with the Tri-Council Policy Statement (TCPS2) for the development of the CHART reporting guideline (#17025). REGISTRATION: This study protocol is preregistered with Open Science Framework: https://doi.org/10.17605/OSF.IO/59E2Q.

Breaking bad news in oncology practice: experience and challenges of oncology health professionals in Ethiopia - an exploratory qualitative study.

OBJECTIVE: To explore the experience and challenges health professionals face during breaking bad news (BBN) to patients with cancer in the oncology centre of Black Lion Specialized Hospital (BLSH), Addis Ababa, Ethiopia 2019. DESIGN: An exploratory qualitative phenominological study using in-depth interviews was carried out in the only radiotherapy integrated oncology centre in Ethiopia during March 2019. Purposeful maximum variation sampling was used to select participants. OpenCode (V.4.02) assisted thematic analysis approach was employed to analyse the data. PARTICIPANTS: Eleven oncology health practitioners (oncologists, residents and nurses) working at the oncology centre were interviewed. Repeated interviews and analysis were done until theoretical saturation. RESULTS: All participants were cognisant of the positive outcome of proper and effective practice of BBN. However, they were practicing it empirically, no standardised protocols or guidelines were in place. Four dimensions of challenges were mentioned: (1) setup centric: unconducive environment, lack of protocols or guidelines, inaccessible treatment, and psychotherapy or counselling services; (2) health care centric, such as inadequate expertise, inadequate time due to patient load,treatment backlog, and referral system; (3) patients/family centric: poor medical literacy level, poor compliance, and family interference; and (4) sociocultural: wrong perception of families on BBN and treatment modalities, and opposition from religious leaders. CONCLUSION: BBN is challenging for professionals caring for patients in the oncology centre of BLSH. Hence, there is a critical need to improve practices. Change efforts may focus on the development of contextualised, content and context specific practice oriented training programmes and curriculum interventions. Raising awareness of the community and religious leaders regarding the nature and treatment of cancer may also be a helpful adjunct.

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.

Effects of the COVID-19 pandemic on people experiencing incarceration: a systematic review.

OBJECTIVE: To assess the effect of the COVID-19 pandemic on people experiencing incarceration (PEI), focusing particularly on clinical outcomes compared with the general population. DESIGN: Systematic review with narrative synthesis in accordance with the Centre for Reviews and Dissemination's good practice guidelines. DATA SOURCES: Medline, Social Policy and Practice, Criminology Connection, ASSIA, EMBASE, SCOPUS, Web Of Science, CINAHL, Cochrane Library, Cochrane COVID-19 reviews, COVID-19 Evidence Reviews and L*OVE COVID-19 Evidence databases were searched up to 21 October 2022. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: We included studies presenting data specific to adults ≥18 years experiencing incarceration, with exposure to SARS-CoV-2 infection. All studies with a comparison group, regardless of study design and country were included. Studies with no comparison group data or not measuring clinical outcomes/health inequalities were excluded. Studies focussing on detained migrants, forensic hospitals, prison staff and those not in English were also excluded. DATA EXTRACTION AND SYNTHESIS: Two reviewers extracted data and assessed risk of bias. Data underwent narrative synthesis using a framework analysis based on the objectives, for infection rates, testing, hospitalisation, mortality, vaccine uptake rates and mental health outcomes. There was no scope for meta-analysis, due to the heterogeneity of evidence available. RESULTS: 4516 references were exported from the databases and grey literature searched, of which 55 met the inclusion criteria. Most were from the USA and were retrospective analyses. Compared with the general population, PEI were usually found to have higher rates of SARS-CoV-2 infection and poorer clinical outcomes. Conflicting data were found regarding vaccine uptake and testing rates compared with the general population. The mental health of PEI declined during the pandemic. Certain subgroups were more adversely affected by the COVID-19 pandemic, such as ethnic minorities and older PEI. CONCLUSION: PEI have poorer COVID-19 clinical outcomes than the general public, as shown by largely low-quality heterogenous evidence. Further high-quality research of continuing clinical outcomes and appropriate mitigating interventions is required to assess downstream effects of the pandemic on PEI. However, performing such research in the context of incarceration facilities is highly complex and potentially challenging. Prioritisation of resources for this vulnerable group should be a focus of national policy in the event of future pandemics. PROSPERO REGISTRATION NUMBER: CRD42022296968.

Suicide-preventive compulsory admission is not a proportionate measure - time for clinicians to recognise the associated risks.

Suicide is considered a global public health issue and compulsory admission is a commonly used measure to prevent suicide. However, the practice has been criticised since several studies indicate that the measure lacks empirical support and may even increase suicide risk. This paper investigates whether the practice has enough empirical support to be considered proportionate. To that end, arguments supporting compulsory admission as a suicide-preventive measure for most suicidal patients are scrutinized. The ethical point of departure is that the expected benefits of compulsory admission should outweigh the potential harms of the measure to be proportionate and defensible. It is concluded that, for most suicidal patients, suicide-preventive compulsory admission cannot be presumed to be a proportionate measure. To be so, the expected medical benefits of the measure should be greater than the potential increase in suicide risk and other harms that compulsory admission could entail. Instead of using compulsory admission as a suicide-preventive measure, extra safety measures may be needed during and after compulsory admission to prevent the risk of hospitalisation-induced suicide.