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.

Parents' experiences with sequencing of all known pediatric cancer predisposition genes in children with cancer.

PURPOSE: Germline DNA sequencing is increasingly used within pediatric oncology, yet parental experiences remain underexplored. METHODS: Parents of children undergoing cancer predisposition gene panel sequencing (143 genes) were surveyed before and after disclosure of results. Questionnaires assessed knowledge, expectations, worries, satisfaction, and regret. Next to descriptives, linear mixed models and generalized mixed models were utilized to explore factors associated with knowledge and worries. RESULTS: Out of 325 eligible families, 310 parents (176 mothers and 128 fathers of 188 families) completed all after-consent questionnaires whereas 260 parents (150 mothers and 110 fathers of 181 families) completed all after disclosure questionnaires. Most parents hoped their participation would benefit others, although individual hopes were also common. Sequencing-related worries were common, particularly concerning whether their child would get cancer again, cancer risks for family members and psychosocial implications of testing. Parental satisfaction after disclosure was high and regret scores were low. Lower education was associated with lower knowledge levels, whereas foreign-born parents were at increased risk of experiencing worries. CONCLUSION: Germline sequencing of children with cancer is generally well received by their parents. However, careful genetic counseling is essential to ensure that parents are adequately informed and supported throughout the process.

Blood over-testing: impact, ethical issues and mitigating actions.

Plenty of studies demonstrate that hospital-acquired anemia (HAA) can increase transfusion rates, mortality, morbidity and cause unnecessary patient burden, including additional length of hospital stay, sleep disruption and venipuncture harms resulting from blood samples unlikely to change clinical management. Beyond patient costs, community costs should also be considered, such as laboratory time and resources waste, environmental impact, increasing pressure on labs and fewer tests available on time for patients who can benefit from them most. Blood over-testing does not support the principles of non-maleficence, justice and respect for patient autonomy, at the expense dubious beneficence. Reducing the number and frequency of orders is possible, to a certain extent, by adopting nudge strategies and raising awareness among prescribing doctors. However, reducing the orders may appear unsafe to doctors and patients. Therefore, reducing blood volume from each order is a better alternative, which is worth implementing through technological, purchasing and organizational arrangements, possibly combined according to need (smaller tubes, adequate analytic platforms, blind dilution, blood conservative devices, aggregating tests and laboratory units).

The debate rages on: physician-assisted suicide in an ethical light.

The British Medical Association and some Royal Colleges have recently changed their stance on physician-assisted suicide from 'opposed' to forms of 'neutral'. The Royal College of Anaesthetists will poll members soon on whether to follow suit. Elsewhere neutrality amongst professional bodies has preceded legalisation of physician-assisted suicide. We examine the arguments relevant to the anaesthesia community and its potential impact in the UK.

When Fulfilling a Professional Obligation Causes Moral Distress: A New Evaluative Approach.

PURPOSE: The term 'moral distress' was coined by Andrew Jameton to name the anguish that clinicians feel when they cannot pursue what they judge to be right because of institutional constraints. We argue that moral distress in critical care should also be addressed as a function of the constraints of ethics and propose an evaluative approach to the experience considering its implications for professional identity. METHOD: We build on a selective review of the literature and analyze a paradigmatic example of moral distress, namely, clinicians who feel compelled to perform procedures on patients that seem futile. Such cases are commonly cited by clinicians as among the most morally distressing. RESULTS: Our analysis shows that (1) physicians' experiences of moral distress can stem not only from toxic workplace cultures and institutional constraints on their time and resources for patient care but also from the limits of ethical reasoning and (2) an emotion-based evaluative approach to analyzing moral distress is needed to address its hazards for professional identity. CONCLUSION: We propose a new evaluative approach to moral distress with implications for professional identity and the need for institutional education and support.

Ethical Implications of Artificial Intelligence in Gastroenterology: The Co-pilot or the Captain?

Though artificial intelligence (AI) is being widely implemented in gastroenterology (GI) and hepatology and has the potential to be paradigm shifting for clinical practice, its pitfalls must be considered along with its advantages. Currently, although the use of AI is limited in practice to supporting clinical judgment, medicine is rapidly heading toward a global environment where AI will be increasingly autonomous. Broader implementation of AI will require careful ethical considerations, specifically related to bias, privacy, and consent. Widespread use of AI raises concerns related to increasing rates of systematic errors, potentially due to bias introduced in training datasets. We propose that a central repository for collection and analysis for training and validation datasets is essential to overcoming potential biases. Since AI does not have built-in concepts of bias and equality, humans involved in AI development and implementation must ensure its ethical use and development. Moreover, ethical concerns regarding data ownership and health information privacy are likely to emerge, obviating traditional methods of obtaining patient consent that cover all possible uses of patient data. The question of liability in case of adverse events related to use of AI in GI must be addressed among the physician, the healthcare institution, and the AI developer. Though the future of AI in GI is very promising, herein we review the ethical considerations in need of additional guidance informed by community experience and collective expertise.

Shared decision-making in adolescent healthcare: a literature review of ethical considerations.

PURPOSE: Adolescence is a period of growing independence and maturity, within the period of legal minority. As parents or guardians are socially and legally responsible for adolescents' medical decisions, shared decision-making in adolescent healthcare could be ethically challenging. This review aims to identify and map the ethical tensions in shared decision-making in adolescent healthcare. METHODS: We systematically searched the literature following the PRISMA guidelines to identify relevant articles, which were analyzed using the review of reasons methodology Strech and Sofaer (J Med Ethics 38(2):121-6, 2012). RESULTS: We included 38 articles which involved adolescents, healthcare professionals and parents as being the main stakeholders. Shared decision-making was influenced not only by individual stakeholders' characteristics, but by tensions between stakeholder dyads. Most studies supported the involvement of the adolescent in decision-making, depending on their life experience, decision-making capacity and clinical condition. CONCLUSIONS: Shared decision-making in adolescent health is receiving increasing attention. However, questions remain on what this concept entails, the roles and involvement of stakeholders and its practical implementation. WHAT IS KNOWN: • Although adolescents wish to be involved in health decisions, shared decision-making in adolescents is underexplored • Adolescent shared decision-making is different from pediatric and adult shared decision-making, and is ethically complex due to the adolescent's growing autonomy What is new: • Adolescent SDM involves three-way interactions between the adolescent, healthcare professional and parents • In adolescent shared decision-making, involving or excluding a stakeholder and sharing or withholding information are ethically value-laden steps • Research is needed to further understand the roles of adolescents' personal value systems, extended or reconstituted families and decision aids in shared decision-making.

The relationship between Iranian women's perception of their birth team's compliance with medical ethics and their perception of labor pain.

BACKGROUND: A safe and satisfactory childbirth experience with the least amount of pain constitutes one of the main domains of reproductive healthcare. The most important aspect of labor pain management is the moral and professional commitment of the health professionals and caregivers involved in creating a pleasant delivery. The present study examines the relationship between Iranian women's perceptions of their birth team's compliance with medical ethics and their perception of labor pain. METHODS: This cross-sectional study was conducted on 200 women opting for natural childbirth. The samples were selected by convenience sampling. Three questionnaires, including a demographic information questionnaire, the perception of labor pain questionnaire, and the medical ethics attitude in vaginal delivery questionnaire, were used to collect data. The data were entered into SPSS 22 and analyzed using correlation coefficient and multiple regression tests. The significance level for data analysis was set as less than 0.05. RESULTS: The results of the regression analysis showed that among the four principles of medical ethics, only the second and third principles (beneficence and non-maleficence) predicted the perception of labor pain (B = -0.267, P < 0.037). Among the different domains of these principles, the areas of giving the necessary information to the mother (B = -0.199, P = 0.001), respecting the mother's privacy (B = -0.194, P = 0.001), interaction with the mother (B = -0.287, P = 0.001) and assurance of fetal health (B = -0.492, P = 0.001) were predictors of labor pain perception score. CONCLUSIONS: Compliance of the birth team with respecting the mother's privacy, having friendly interactions with the mother and giving fetal health assurance to the mother can be a predictor of the mother's decreased perception of labor pain.

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.

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.

Parents' experiences of palliative care decision-making in neonatal intensive care units: An interpretative phenomenological analysis.

AIM: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn. METHODS: Audio-recorded face-to-face interviews were led and analysed using interpretative phenomenological analysis. Eight families (seven mothers and five fathers) whose baby underwent withholding and/or withdrawing of life-sustaining treatment in three neonatal intensive care units from two regions in France were included. RESULTS: The findings reveal two paradoxes within the meaning-making process of parents: role ambivalence and choice ambiguity. We contend that these paradoxes, along with the need to mitigate uncertainty, form protective psychological mechanisms that enable parents to cope with the decision, maintain their parental identity and prevent decisional regret. CONCLUSION: Role ambivalence and choice ambiguity should be considered when shared decision-making in the neonatal intensive care unit. Recognising and addressing these paradoxical beliefs is essential for informing parent support practices and professional recommendations, as well as add to ethical discussions pertaining to parental autonomy and physicians' rapport to uncertainty.

Informed Consent Under Ignorance.

In recent years, an old challenge to informed consent has been rediscovered: the challenge of ignorance. Several authors argue that due to the presence of irreducible ignorance in certain treatments, giving informed consent to these treatments is not possible. The present paper examines in what ways ignorance is believed to prevent informed consent and which treatments are affected by that. At this, it becomes clear that if the challenge of ignorance truly holds, it poses a major problem to informed consent. The paper argues, however, that from both an empirical and a theoretical point of view, it is not convincing that ignorance prevents informed consent. Still, it seems important that the presence of irreducible ignorance is openly discussed during the informed consent process.

Medical ethics education as translational bioethics.

We suggest that in the particular context of medical education, ethics can be considered in a similar way to other kinds of knowledge that are categorised and shaped by academics in the context of wider society. Moreover, the study of medical ethics education is translational in a manner loosely analogous to the study of medical education as adjunct to translational medicine. Some have suggested there is merit in the idea that much as translational research attempts to connect the laboratory scientist's work to its implications for patient care, translational ethics focuses on bringing ethics scholarship into the sphere of personal and public action. We distinguish the term 'translational ethics' (the study of ethics being translated between academy, classroom and clinic) from other prominent definitions in the bioethics literature. To do this, we build off a notion of knowledge translation that focuses on the nonlinear movement of information that comes to professionals through multiple competing sources. We suggest that this knowledge, and particularly knowledge about ethics, becomes embodied by the individual. It is through a reflective practice that internally embedded ethics knowledge might be modified, and this work might be best carried out with a moral community that maintains a sense of practical wisdom. Applying this translational approach to the study of medical ethics education can be both academically relevant and practically useful. This view of translation can help bridge the evident, multidirectional relationships between research, education and performance. It might also create further opportunities to develop medical ethics education theory.

Consent and Educational Sensitive Exams on Anesthetized Patients: Experiences of Medical Students Across Canada.

OBJECTIVES: This study investigates experiences of medical students across Canada related to consent for educational sensitive (i.e., pelvic, rectal) exams under anesthesia (EUAs). METHODS: A bilingual online questionnaire was developed and distributed to medical students across Canada. RESULTS: Of 134 respondents, 63% had performed a pelvic EUA, 35% a rectal EUA, and 11% another sensitive EUA during their training. For those who had performed pelvic EUA, 28% were unsure if consent had taken place, 26% reported no specific consent, 20% reported specific consent, and 25% had mixed experiences of consent. For rectal EUAs, 48% reported no specific consent, 37% were unsure if consent had taken place, 13% reported that there had been specific consent, and 2% reported mixed experiences. Most respondents were uncomfortable (36%) or not sure if they were comfortable (32%) with how the consent process was handled for student pelvic EUAs; 31% were comfortable. In open-ended responses, respondents described experiences related to variability, discomfort, and authority. CONCLUSIONS: Non-consensual educational sensitive EUAs continue to take place in medical training across Canada, although practices of consent are highly variable. The majority of respondents reported being uncomfortable or unsure if they were comfortable with how consent for educational sensitive EUAs was practised during their training, and some respondents struggled to express their discomfort given the power dynamics at play.

Age-related hearing loss and "hearables": An agenda for moral considerations.

Rapid advances in digital hearing technologies, also known as hearables, are expected to disrupt the direct-to-consumer health market. For older adults with higher incidence of hearing loss, such disruption could reduce hearing problems, increase accessibility to hearing aids, and mitigate related stigmas. This paper delves into the intersection of disruptive innovation and hearables within the realm of biomedical ethics. Through a comprehensive exploration, we shed light on the ethical implications surrounding hearables. By critically evaluating the key ethical advantages and drawbacks, we find that no single concern presents an insurmountable a priori objection to hearables. We conclude with some ideas to maximize the benefits of hearables and further promote opportunities for equitable hearing health.

Should obstetric mortality be an inalienable right?

BACKGROUND: Obstetricians often times find themselves in a conflict of right and duty with their patients, when these patients refuse recommended treatment. On the one hand, the obstetrician, aiming to fulfil the duty of care, recommends a treatment in the best interest of the woman. The woman, on the other hand, exercising her right of self-determination and autonomy, declines the recommended treatment. MATERIALS AND METHODS: A search was conducted for literature, articles and case reports on the subject on PubMed/MEDLINE and Google Scholar using the keywords: medical ethics, medical law, obstetric mortality, maternal medicine, foetal medicine, patient autonomy, informed consent, right to life and right to liberty. RESULTS: Opinions have historically differed on whether maternal or foetal rights should be deferred to in situations where pregnant women refuse obstetric interventions. So also have legal decisions on the issue. The general consensus is, however, to respect a woman's refusal of recommended medical treatment, in deference to her right of self-determination and autonomy. The obstetric outcomes in such instances are however, often times, unfavourable. CONCLUSION: The ethics of patient care in the face of conflicting rights deserves renewed examination and discourse.

Analyzing the composition of the editorial boards in high-impact medical ethics journals: a survey study.

BACKGROUND: The underrepresentation of scholarly works from low- and middle-income countries (LMICs) in academic literature is a documented concern, attributed partly to editorial biases. This trend, prevalent across various disciplines, has been less explored in the context of medical ethics journals. This study aimed to examine the composition of editorial board members (EBM) in high-impact medical ethics journals and to evaluate the extent of international diversity within these editorial teams. METHODS: This study incorporated an analysis of 16 high-impact medical ethics journals. Information regarding the EBM of these journals was systematically gathered and categorized based on the World Bank's country income classifications. An in-depth examination of the editorial board compositions was then conducted. RESULTS: The study identified 669 EBM across the selected journals. A predominant 89.84% (601) of these members were from high-income countries (HICs), with upper-middle-income countries contributing 7.47% (50) and lower-middle-income countries 2.69% (18). No EBM were associated with low-income countries. A regional breakdown indicated that North America was the most represented area, accounting for 48.88% (327), followed by Europe & Central Asia (27.50%, 184), East Asia & Pacific (13.45%, 90), Latin America & Caribbean (4.63%, 31), Sub-Saharan Africa (4.19%, 28), Middle East & North Africa (0.75%, 5), and South Asia (0.60%, 4). In total, these EBMs hailed from 46 different countries, with the United States representing the largest proportion (43.80%, 293), followed by the United Kingdom (13.15%, 88), Australia (7.92%, 53), Germany (6.73%, 45), and Canada (5.08%, 34). CONCLUSIONS: There is a significant lack of international representation within the EBM of high-impact medical ethics journals. The majority of editors in this field are affiliated with HICs, leading to a severe underrepresentation of LMICs within the editorial boards.

Encompassing trust in medical AI from the perspective of medical students: a quantitative comparative study.

BACKGROUND: In the years to come, artificial intelligence will become an indispensable tool in medical practice. The digital transformation will undoubtedly affect today's medical students. This study focuses on trust from the perspective of three groups of medical students - students from Croatia, students from Slovakia, and international students studying in Slovakia. METHODS: A paper-pen survey was conducted using a non-probabilistic convenience sample. In the second half of 2022, 1715 students were surveyed at five faculties in Croatia and three in Slovakia. RESULTS: Specifically, 38.2% of students indicated familiarity with the concept of AI, while 44.8% believed they would use AI in the future. Patient readiness for the implementation of technologies was mostly assessed as being low. More than half of the students, 59.1%, believe that the implementation of digital technology (AI) will negatively impact the patient-physician relationship and 51,3% of students believe that patients will trust physicians less. The least agreement with the statement was observed among international students, while a higher agreement was expressed by Slovak and Croatian students 40.9% of Croatian students believe that users do not trust the healthcare system, 56.9% of Slovak students agree with this view, while only 17.3% of international students share this opinion. The ability to explain to patients how AI works if they were asked was statistically significantly different for the different student groups, international students expressed the lowest agreement, while the Slovak and Croatian students showed a higher agreement. CONCLUSION: This study provides insight into medical students' attitudes from Croatia, Slovakia, and international students regarding the role of artificial intelligence (AI) in the future healthcare system, with a particular emphasis on the concept of trust. A notable difference was observed between the three groups of students, with international students differing from their Croatian and Slovak colleagues. This study also highlights the importance of integrating AI topics into the medical curriculum, taking into account national social & cultural specificities that could negatively impact AI implementation if not carefully addressed.

Compromised informed consent due to functional health literacy challenges in Chinese hospitals.

BACKGROUND: Medical informed consent stands as an ethical and legal requisite preceding any medical intervention. Hospitalized patients face functional health literacy (FHL) challenges when dealing with informed consent forms (ICFs). The legitimacy of ICFs and informed consent procedures in China remains substantially undisclosed. The study's aim was to investigate if Chinese patients have adequate FHL to be truly informed before providing medical consent. METHODS: In this cross-sectional, structured interview-based study, FHL was assessed within the context of the informed consent scenarios in two teaching hospitals (a 1500-bed general tertiary hospital and a 700-bed cancer hospital) affiliated with Shantou University Medical College. Twenty-seven patients admitted across clinical departments, along with their relatives (n = 59), were enrolled in the study after obtaining informed consent. The participants underwent a three-step assessment with two selected ICFs -teach-back skills, perceived understanding (perception), and informed knowledge (cognizance), with each component carrying a maximum score of 10. Data were analyzed with SPSS (version 22.0) for descriptive and inferential statistics, with consideration of significant P values as < 0.05. RESULTS: The median age (IQR and range) of participants was 35.5 (28 - 49 and 13 - 74) years. Most participants had only high school education (24.4%, 21/86) or below high school education (47.7%, 41/86). The median score (IQR) of FHL assessments-teach-back, perception, and cognizance-was 4.0 (2.5, 5.8), 8.0 (6.8, 8.8), and 6.5 (5.5, 8.0) out of 10, respectively. A moderate correlation was observed between the scores of cognizance and teach-back (r = 0.359, P = 0.002) or perception (r = 0.437, P < 0.001). Multivariate linear regression analysis predicted being a patient and having lower education levels as independent risk factors of inadequate FHL (Ps = 0.001). Lack of patient-centeredness in ICFs, time constraints, and poor clinical communication were identified as barriers impeding informed consent. CONCLUSIONS: This study demonstrates inadequacy in personal FHL and impaired organizational HL, resulting in compromised informed consent in Chinese teaching hospitals. As a remedy, we propose improving the quality of ICFs and institutionally mandated outcome-focused training on informed consent for all concerned clinicians to enhance medical ethics, ensure quality health care, address patient values, and mitigate potential medical conflicts.

"That's just Future Medicine" - a qualitative study on users' experiences of symptom checker apps.

BACKGROUND: Symptom checker apps (SCAs) are mobile or online applications for lay people that usually have two main functions: symptom analysis and recommendations. SCAs ask users questions about their symptoms via a chatbot, give a list with possible causes, and provide a recommendation, such as seeing a physician. However, it is unclear whether the actual performance of a SCA corresponds to the users' experiences. This qualitative study investigates the subjective perspectives of SCA users to close the empirical gap identified in the literature and answers the following main research question: How do individuals (healthy users and patients) experience the usage of SCA, including their attitudes, expectations, motivations, and concerns regarding their SCA use? METHODS: A qualitative interview study was chosen to clarify the relatively unknown experience of SCA use. Semi-structured qualitative interviews with SCA users were carried out by two researchers in tandem via video call. Qualitative content analysis was selected as methodology for the data analysis. RESULTS: Fifteen interviews with SCA users were conducted and seven main categories identified: (1) Attitudes towards findings and recommendations, (2) Communication, (3) Contact with physicians, (4) Expectations (prior to use), (5) Motivations, (6) Risks, and (7) SCA-use for others. CONCLUSIONS: The aspects identified in the analysis emphasise the specific perspective of SCA users and, at the same time, the immense scope of different experiences. Moreover, the study reveals ethical issues, such as relational aspects, that are often overlooked in debates on mHealth. Both empirical and ethical research is more needed, as the awareness of the subjective experience of those affected is an essential component in the responsible development and implementation of health apps such as SCA. TRIAL REGISTRATION: German Clinical Trials Register (DRKS): DRKS00022465. 07/08/2020.