• Consent for Research Involving Spanish- and English-Speaking Latinx Adults With Schizophrenia.

  Barrio, Concepción; Fuentes, Dahlia; Tibiriçá, Lize; Hernandez, Mercedes; Helu-Brown, Paula; Golshan, Shahrokh; Palmer, Barton (eScholarship, University of California, 2024-04-30)

  BACKGROUND: Latinxs are vastly underrepresented in mental health research; one of many contributing factors may be complexities in the research consent process, including language preferences. We examined determinants of comprehension of research consent procedures and tested the effects of a preconsent research schema condition among 180 adults with schizophrenia (60 Latinx-English and 60 Latinx-Spanish preference, and 60 non-Latinx White). STUDY DESIGN: Participants were randomly assigned (equal allocation) to an educational session regarding clinical research concepts and processes (schema condition) or to an attention control. Following a subsequent simulated consent procedure for a hypothetical drug trail, comprehension of consent disclosures was measured with 2 standard measures. STUDY RESULTS: One-way ANOVAs showed significant medium effect size differences between ethnicity/language groups on both measures of comprehension (η2s = 0.066-0.070). The Latinx-Spanish group showed lower comprehension than non-Latinx White participants; differences between the 2 Latinx groups did not reach statistical significance. Group differences were not statistically significant after adjusting for differences in education, or on scores from structured measures of acculturation, health literacy, or research literacy. Two-way ANOVAs showed no significant main effects for consent procedure on either comprehension measure (Ps > .369; partial η2s < 0.006) and no significant group-by-consent interactions (Ps > .554; partial η2s < 0.008). CONCLUSIONS: Although the preconsent procedure was not effective, the results suggest health and research literacy may be targets for reducing disparities in consent comprehension. The onus is on researchers to improve communication of consent information as an important step to addressing health care disparities.
• Longitudinal policy surveillance of state obesity legislation in California, 1999–2020

  Payán, Denise D; Chan-Golston, Alec M; Garibay, Kesia K; Farias, Corbin (eScholarship, University of California, 2024-11-01)

  BackgroundObesity rates among children and adults continue to accelerate in the U.S., particularly among marginalized and low-income populations. Obesity prevention and reduction policies can significantly impact population health by improving environmental conditions and increasing access to health-promoting resources. Limited research has been conducted to examine state obesity policy change over time. The primary aim of this study is to examine legislative approaches used to prevent and reduce obesity in the state of California (U.S.).MethodsWe used quantitative policy surveillance methods to develop a state database of obesity-related legislation (bills, resolutions) introduced in California's legislature between 1999 and 2020. Descriptive statistics were used to examine trends of introduced and enacted policy by legislative and policy characteristics. Chi-square tests were used to determine differences in characteristics between enacted and non-enacted legislation. Legislative session and policy characteristics found to be associated with enactment were used to predict adoption in a logistic regression.ResultsA total of 284 obesity-related bills and resolutions were introduced in California's legislature between 1999 and 2020 with a peak of 43 in 2005-2006. On average, 25.8 bills and resolutions were introduced each 2-year legislative cycle. Findings indicate that (a) children and schools were the most frequently specified population and setting; (b) the most common policy topics were nutrition (45%) and physical activity (33%); and (c) only 15% of legislation mentioned race/ethnicity. Overall, 24.9% of bills were enacted compared to 82.1% of resolutions adopted. Legislation to raise awareness about obesity had 5.4 times the odds of being passed compared to other topics. Yet this difference was not statistically significant in a sensitivity analysis when we excluded resolutions.ConclusionsThis database can be leveraged to advance our knowledge of effective and equitable policy instruments to prevent and reduce obesity. Results reveal important policy elements that may impact legislative success, including policy topic, and contribute to a nascent evidence base for public health law research, legal epidemiology, and practice. Future work should investigate the role of policy effectiveness research and evidence on legislative policymaking.
• Working with Aboriginal young people in sexual health research: a peer research methodology in remote Australia

  S Bell (7731767); P Aggleton (13376295); A Lockyer (10110052); T Ferguson (10110055); W Murray (10110058); B Silver (10110061); J Kaldor (9858737); L Maher (9856208); J Ward (7746140) (2021-01-01)

  In a context of ongoing colonization and dispossession in Australia, many Aboriginal people live with experiences of health research that is done “on” rather than “with” or “by” them. Recognizing the agency of young people and contributing to Aboriginal self-determination and community control of research, we used a peer research methodology involving Aboriginal young people as researchers, advisors, and participants in a qualitative sexual health study in one remote setting in the Northern Territory, Australia. We document the methodology, while critically reflecting on its benefits and limitations as a decolonizing method. Findings confirm the importance of enabling Aboriginal young people to play a central role in research with other young people about their own sexual health. Future priorities include developing more enduring forms of coinvestigation with Aboriginal young people beyond data collection during single studies, and support for young researchers to gain formal qualifications to enhance future employability.
• Acción de tutela. Mecanismo jurídico al alcance de los extranjeros, para acceder a un trasplante de órganos en Colombia

  Better Gil, Raquel; Ramírez Motta, Laura Esperanza (Universidad Autónoma de Bucaramanga UNABFacultad Ciencias Jurídicas y PolíticasEspecialización en Responsabilidad Médica, 2024-11-26)

  Las Acciones de tutela falladas a favor de extranjeros, abren un vacío jurídico, normativo y ético frente al tema, ya que algunos jueces están desconociendo la normatividad que el país ha venido construyendo en este sentido, inaplicando el
 artículo 40 del decreto 2493 del 2004 por inconstitucional, mediante el cual se da prioridad a pacientes nacionales y extranjeros residentes para acceder a un componente anatómico.
• We Have Lost Our Minds

  Brown, Teneille Ruth (DigitalCommons@Pace, 2024-11-21)

  This Article examines the paradoxical treatment of autonomy in American healthcare law. While autonomy has become the dominant principle in medical ethics and neoliberal market philosophies, pregnant people have been systematically denied this same autonomy through increasingly restrictive abortion statutes. Using the rhetoric of “informed consent,” abortion-restrictive statutes ironically pervert the animating principles behind the doctrine—rendering it almost meaning- less. I argue that this contradiction stems from the dehumanization of pregnant people who seek abortions, particularly through the denial of their capacity to have individual, complex mental states and feelings. Drawing on moral psychology, the Article demonstrates how pregnant people are cast either as irrational and incompetent, or as cold and calculating, but never as fully human agents capable of making rational healthcare decisions. This dehumanization enables policymakers to strip pregnant people of the very autonomy that is championed in other medical contexts, while simultaneously blaming them for the inequalities that flow from the neoliberal system. I conclude by reflecting on how respect for autonomy has become hollow rhetoric that masks deep sexism both in medicine and the marketplace.
• Making ethics visible : Doctors´moral reasoning in patient care

  Heidenreich, Kaja (Örebro universitet, Institutionen för medicinska vetenskaperÖrebro : Örebro University, 2024)

  Healthcare is infused with values concerning what is important to patients and healthcare professionals and, thereby, ethics might seem to be inherent and self-evident. However, in clinical practice, ethics is elusive and difficult to articulate, and a gap persists between theory and practice. Thus, the overall aim of this thesis was to generate understandings about ethics close to practice by exploring doctors’ moral reasoning when caring for the patient. The research design was qualitative and explorative. The phenomenon of‘moral reasoning’ was explored in 22 audio recorded ethical reflection groups (Moral case deliberation) (I), 27 interviews with UK consultants about their experiences of the complex decision-making process of initiating intensive care (II), 19 Swedish vascular surgeons in the outpatient setting (III), and observation and audio recording of 7 team conferences accompanied by 23 follow-up interviews with vascular surgeons (VI). The data were analysed by using content analysis, employing a phenomenological-hermeneutical method, and systematic text condensation. A composite result of the four studies revealed moral reasoning as a proces sof balancing between promoting the patient’s best interests and the patients’ preferences, deliberating one’s moral responsibility in the patient’s care, and expanding understandings of complex situations through multiple perspectives. Moral reasoning is embedded in the clinical language, and the patient encounter emerges as the hub for these reasonings. As such, the patient encounter signifies carefully exploring the clinical details of the case to weigh conflicting values, to expand one’s understanding of the patient’s health and life beyond the diseases, and to explore the patient’s wishes for care. Meetings between doctors to discuss the patient’s care entailed learning by broadening their understanding of complex situations as well as balancing different perceptions to reach reasonable decisions. The doctors’ own security instanding in complex decision-making and critical situations can be facilitated through discussions with colleagues as well as meetings by expanding perspectives and generating new understanding of what is important in a clinical situation. The clinical implications of this knowledge are that ethics is a tangible part of doctors’ care of patients that needs continuous exploration and verbalizing as a means of maintaining quality of care, which is a moral obligation in itself.
• RETROSPECTIVE BIOSTATISTICAL ANALYSIS DATA FOR ESTABLISHING SAFETY IN MONOTHERAPY INVOLVING LIFE SAVING DRUGS

  MJ, Venkatesan; N, Dinesh (Zenodo, 2024-11-20)

  <p>Establishment of safety in the context of monotherapy involving life saving drugs </p>
• Utopia versus dystopia: Professional perspectives on the impact of healthcare artificial intelligence on clinical roles and skills

  Yves Saint James Aquino (12311423); Wendy A Rogers (16803394); Annette Braunack-Mayer (3574355); Helen Frazer (16803391); Khin Than Win (7917677); Nehmat Houssami (54551); Christopher Degeling (20273394); Christopher Semsarian (135009); Stacy M Carter (16803385) (2023-01-01)

  Background: Alongside the promise of improving clinical work, advances in healthcare artificial intelligence (AI) raise concerns about the risk of deskilling clinicians. This purpose of this study is to examine the issue of deskilling from the perspective of diverse group of professional stakeholders with knowledge and/or experiences in the development, deployment and regulation of healthcare AI. Methods: We conducted qualitative, semi-structured interviews with 72 professionals with AI expertise and/or professional or clinical expertise who were involved in development, deployment and/or regulation of healthcare AI. Data analysis using combined constructivist grounded theory and framework approach was performed concurrently with data collection. Findings: Our analysis showed participants had diverse views on three contentious issues regarding AI and deskilling. The first involved competing views about the proper extent of AI-enabled automation in healthcare work, and which clinical tasks should or should not be automated. We identified a cluster of characteristics of tasks that were considered more suitable for automation. The second involved expectations about the impact of AI on clinical skills, and whether AI-enabled automation would lead to worse or better quality of healthcare. The third tension implicitly contrasted two models of healthcare work: a human-centric model and a technology-centric model. These models assumed different values and priorities for healthcare work and its relationship to AI-enabled automation. Conclusion: Our study shows that a diverse group of professional stakeholders involved in healthcare AI development, acquisition, deployment and regulation are attentive to the potential impact of healthcare AI on clinical skills, but have different views about the nature and valence (positive or negative) of this impact. Detailed engagement with different types of professional stakeholders allowed us to identify relevant concepts and values that could guide decisions about AI algorithm development and deployment.
• Navigating parental decision-making: Intersex surgeries in Italy

  Prandelli, Marta; Crocetti, Daniela (Elsevier Ltd, 2024-11-08)

  Decision-making dynamics in Italian paediatric care for Intersex and Variations of Sex Characteristics (VSC) involve a complex interplay between medical practices, parental perspectives, and socio-cultural factors. This article explores how medical professionals and parents make decisions amid cultural debates on gender, the body, and autonomy. It addresses aspects of why surgical intervention, with limited child involvement, is often seen as the ‘only option’ in the ‘conservative’ culture of Italy. The article continues to highlight the rise of parent-led human rights-based activism in Italy, challenging prevailing narratives in intersex/VSC paediatric care. Using qualitative data from two studies, including interviews with 15 Italian stakeholders and 38 Italian parents, as well as participant action research, the article provides insights into Italian medical and parental perspectives. The findings emphasize the need for nuanced support, education, and resources to empower parents in order to uphold the rights and well-being of intersex individuals.
• M.Sc MedEd Dissertation

  Fabio Galli (18700489) (2024-11-18)

  M.Sc MedEd dissertation
• Ethics of care and the ethics of justice in ethical decision making in the health team

  Inaugural addresses (20282298) (1997-08-27)

  Inaugural lecture--Dept. of Nursing, Rand Afrikaans University, 27 August 1997@@From case studies it appears that nurses and doctors as central agents in ethical decision making in the health team, approach ethical problems from two different and opposing perspectives. The way in which doctors make ethical decisions is associated with Kohlberg's (1981) ethics of justice, while the ethical decisions made by nurses are associated with Gilligan's (1982) ethics of care. There is little or no interaction between the different disciplines in the health team when ethical decisions are made. Such a situation leads to ineffective ethical decision making since it involves conflict and unnecessary physical and mental suffering with accompanying financial implications. A possible solution to this problem is the complementary use of the ethics of justice and the ethics of care in ethical decision making in the health team. The way in which the two ethical perspectives are used complementary to one another is through discourse which involves a wider rationality model and ethics of virtues are used. This solution is found in an investigation into the nature of the two ethical perspectives. Such a solution makes interaction possible, and probably also more effective ethical decision making without expecting significant paradigm changes in the two disciplines.
• Ethical principles for the creation and application of artificial intelligence technologies in healthcare

  A. A. Shutova; I. R. Begishev (Dostoevsky Omsk State University, 2024-03-01)

  The subject of the study is the norms of current legislation regulating the creation and application of artificial intelligence technology in healthcare, including acts of technical regulation, as well as available scientific research by domestic and foreign scientists in the field presented. In recent years, foreign experts have conducted a significant amount of research on the development of ethical principles for the use of artificial intelligence in healthcare. However, these works tend to be abstract and do not explain what justifies and justifies their recommendations and how these recommendations should be used in practice. In turn, in the Russian Federation at the moment there is a small number of domestic studies devoted to a comprehensive study of ethical principles that should guide subjects engaged in the creation and use of medical devices based on artificial intelligence technologies, which confirms the relevance and significance of our research.Objective: to develop a system of ethical principles for the creation and application of artificial intelligence technologies in the field of healthcare, which will serve as the basis for the legal regulation of public relations in the presented area.Methods: the methodological basis of the system of ethical principles for the creation and application of artificial intelligence technologies was made up of general scientific and private scientific methods of scientific cognition, including analysis, synthesis, deduction, induction, classification, analogy and comparison.Results: to the attention of lawyers, scientists and practitioners, medical professionals, members of clinical ethics committees, medical ethics specialists, representatives of law– making bodies, government departments, the business community and public organizations, patients, as well as a wide range of readers interested in the digital transformation of the healthcare system, ethical principles for the creation and application of artificial health technologies are proposed intelligence in healthcare, which can serve as the basis for the formation of an appropriate system of legal regulation. The stated goal has been achieved, which is confirmed by the development of a system of ethical principles that serve as the basis for the development of a system of legal regulation of artificial intelligence technologies in healthcare. The developed ethical principles can be used to further improve domestic legislation, and also lay the foundation for further research.
• Priority allocation of pandemic influenza vaccines in Australia – Recommendations of 3 community juries

  C Degeling (13632994); J Williams (7634615); S M Carter (13632349); R Moss (13753873); P Massey (9855281); G L Gilbert (13370082); P Shih (13579915); A Braunack-Mayer (13442436); K Crooks (13279113); D Brown (9868400) (2021-01-08)

  Background: Pandemic planning has historically been oriented to respond to an influenza virus, with vaccination strategy being a key focus. As the current COVID-19 pandemic plays out, the Australian government is closely monitoring progress towards development of SARS-CoV2 vaccines as a definitive intervention. However, as in any pandemic, initial supply will likely be exceeded by demand due to limited manufacturing output. Methods: We convened community juries in three Australian locations in 2019 to assess public acceptability and perceived legitimacy of influenza pandemic vaccination distribution strategies. Preparatory work included literature reviews on pandemic vaccine allocation strategies and on vaccine allocation ethics, and simulation modelling studies. We assumed vaccine would be provided to predefined priority groups. Jurors were then asked to recommend one of two strategies for distributing remaining early doses of vaccine: directly vaccinate people at higher risk of adverse outcomes from influenza; or indirectly protect the general population by vaccinating primary school students, who are most likely to spread infection. Results: Thirty-four participants of diverse backgrounds and ages were recruited through random digit dialling and topic-blinded social media advertising. Juries heard evidence and arguments supporting different vaccine distribution strategies, and questioned expert presenters. All three community juries supported prioritising school children for influenza vaccination (aiming for indirect protection), one by 10–2 majority and two by consensus. Justifications included that indirect protection benefits more people and is likely to be more publicly acceptable. Conclusions: In the context of an influenza pandemic, informed citizens were not opposed to prioritising groups at higher risks of adverse outcomes, but if resources and epidemiological conditions allow, achieving population benefits should be a strategic priority. These insights may inform future SARS-CoV-2 vaccination strategies.
• Informed Consent

  Ginsberg, Marc (UIC Law Open Access Repository, 2022-01-01)
• First official report on euthanasia in Spain: A comparison with the Canadian and New Zealand experiences

  Esparza Espericueta, José Luis (2024-11-04)

  INEDyTO II project
• Why Won’t You Listen To Me? Predictive Neurotechnology and Epistemic Authority

  Alessio Tacca (14750542); Frederic Gilbert (14737459) (2023-08-24)

  From epileptic seizures to depressive symptoms, predictive neurotechnologies are used for a large range of applications. In this article we focus on advisory devices; namely, predictive neurotechnology programmed to detect specific neural events (e.g., epileptic seizure) and advise users to take necessary steps to reduce or avoid the impact of the forecasted neuroevent. Receiving advise from a predictive device is not without ethical concerns. The problem with predictive neural devices, in particular advisory ones, is the risk of seeing one’s autonomous choice supplanted by the predictions instead of being supplemented by it. For users, there is a potential shift from being assisted by the system to being over-dependent on the technology. In other terms, it introduces ethical issues associated with epistemic dependency. In this article, we examine the notion of epistemic authority in relation to predictive neurotechnologies. Section 1 of our article explores and defines the concept of epistemic authority. In section 2, we illustrate how predictive devices are best conceived of as epistemic authorities and we explore the subject-device epistemic relationship. In section 3, we spell out the risk of harms interconnected with epistemic deferral. We conclude by stressing a set of preliminary measures to prepare users for the authoritative nature of predictive devices.
• What do health care professionals want to know about assisted dying? Setting the research agenda in New Zealand

  Jessica Young (10456118); J Snelling (9858113); Sophie Beaumont (8512272); K Diesfeld (19966302); B White (9869411); L Willmott (9886058); J Robinson (11945990); A Ahuriri-Driscoll (19966305); G Cheung (12219641); Aida Dehkhoda (16818222) (2023-12-01)

  Background: New Zealand recently introduced law permitting terminally ill people to request and receive assisted dying (AD) in specified circumstances. Given the nature and complexity of this new health service, research is vital to determine how AD is operating in practice. Objective: To identify research priorities regarding the implementation and delivery of AD in New Zealand. Methods: Using an adapted research prioritisation methodology, the researchers identified 15 potential AD research topics. A mixed-methods survey of health professionals was undertaken where respondents were asked to rate the 15 topics according to the relative importance for research to be conducted on each issue. Respondents could also suggest additional research areas, and were invited to participate in a follow-up interview. Results: One hundred and nineteen respondents completed the survey. 31% had some experience with AD. The highest rated research topic was the ‘effectiveness of safeguards in the Act to protect people’; the lowest rated topic was research into the ‘experiences of non-provider (e.g., administrative, cleaning) staff where assisted dying is being provided’. Respondents suggested 49 other research topics. Twenty-six interviews were conducted. Thematic analysis of interview data and open-ended survey questions was undertaken. Six research themes were identified: general factors related to the wider health system; the experiences of health care providers at the bedside; medico-legal issues; the impact of AD; experiences on the day of dying; and the overall effectiveness of the AD system. Key issues for stakeholders included safety of the AD service; ensuring access to AD; achieving equity for ‘structurally disadvantaged’ groups; and ensuring the well-being of patients, families/whānau, providers and non-providers. Conclusions: Based on early experiences of the implementation of the AD service, health professionals provide important insights into what research should be prioritised post-legalisation of AD. These findings can be used to shape the research agenda so that research may inform law, policy and best practice.
• Liver transplantation for non-resectable liver metastases from colorectal cancer: a aystematic review and meta-analysis

  Rebecca Varley (19926939); Munir Tarazi (15244735); Madhav Davé (19926942); Shahd Mobarak (15244732); Martyn C Stott (19926945); Minas Baltatzis (4963660); Thomas Satyadas (7055207) (2024-11-04)

  Backgrounds: Colorectal liver metastases were historically considered a contraindication to liver transplantation, but dismal outcomes for those with metastatic colorectal cancer and advancements in liver transplantation (LT) have led to a renewed interest in the topic. We aim to compare the current evidence for liver transplantation for non-resectable colorectal liver metastases (NRCLM) with the current standard treatment of palliative chemotherapy. Methods: A systematic review and meta-analysis of proportions was conducted following screening of MEDLINE, EMBASE, SCOPUS and CENTRAL for studies reporting liver transplantation for colorectal liver metastases. Post-operative outcomes measured included one-, three- and five-year survival, overall survival, disease-free survival and complication rate. Results: Three non-randomised studies met the inclusion criteria, reporting a total of 48 patients receiving LT for NRCLM. Survival at one-, three- and five-years was 83.3-100%, 58.3-80% and 50-80%, respectively, with no significant difference detected (p = 0.22, p = 0.48, p = 0.26). Disease-free survival was 35-56% with the most common site of recurrence being lung. Thirteen out of fourteen deaths were due to disease recurrence. Conclusion: Although current evidence suggests a survival benefit conferred by LT in NRCLM compared to palliative chemotherapy, the ethical implications of organ availability and allocation demand rigorous justification. Concomitant improvements in the management of patients following liver resection and of palliative chemotherapy regimens is paramount.
• Management and disposal of human remains acquired for medical education – A forensic perspective

  Neelkamal Battu; Rutuja Kanekar; Siddharth Sawardekar; Girish Tasgaonkar; Vikrant Waghmare (Elsevier, 2024-12-01)

  In medical schools, the foundational subject of human anatomy usually requires the medical students to procure a set of human bones, either real or artificial, for comprehensive understanding of the human body. The proper maintenance and disposal of these human remains is the responsibility of the students and the institutions possessing the remains. Improper disposal of human remains can have far-reaching implications, including ethical, legal, public health, environmental, social, and psychological consequences. We present a case of a human skull used for medical studies found dumped in a garbage, leading to unnecessary investigation by the law authorities. The case brings to light the need for including ethical disposal of academic human skeletons at the beginning of the medical curriculum. The authors also discuss in detail the various legal provisions and cultural practices of disposal of human remains in the Indian scenario.
• Ethical considerations in collaborative care in severe and enduring anorexia: an application of an ethical decision-making model

  Richard Knight (268599) (2019-11-20)

  Severe and enduring anorexia nervosa (SE-AN) is a mental illness with a high morbidity and mortality rate. It can profoundly affect a person's quality of life and relationships due to frequent periods of relapses and remissions. Many people become critically unwell and refuse treatment because they fear gaining weight, and they become resistant when subjected to coercion. Psychiatric advance directives (PADs) can reduce treatment refusal and enhance collaboration between health professionals and patients. SE-AN is an ethical concern for health practitioners, families and ethicists. Few qualitative studies have explored the ethical debate of whether to impose forced treatment or respect a person's right to refuse medical care. This thesis critiques both arguments and explores the ethical considerations. It uses a constructivist-interpretivist grounded theory method guided by a symbolic interactionist approach to inductively build an ethical decision-making model framed under the auspices of PADs. A purposeful homogenous sample of five women with SE-AN and eight clinicians participated in semi-structured interviews and focus groups. All participants were recruited from a hospital in Melbourne, Australia. The results confirmed that coercion is a moral and ethical problem when treating people with SE-AN. The central concern was that they lacked control over the illness, specifically in relation to provision of care, decision-making process, living with the debilitating effects of anorexia and absence of knowledge regarding PADs. The model addresses these concerns by enabling people with SE-AN to collaborate with their healthcare providers regarding their treatment preferences if they lose their ability to make decisions. In clinical practice, if patients' rights and treatment preferences are not respected, this may result in further acts of coercion, which may damage the therapeutic relationship and leave the patient feeling powerless and not in control of their illness. The sample size limited the generalisation of the findings. Future researchers should empirically test and modify the model for other clinical settings and patient groups to enhance the transferability of findings.

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