Public health ethics

This article presents the report of the session on "Newborn Screening for Primary Immunodeficiencies-Now What?" organised during the International Primary Immunodeficiency Congress (IPIC) held in November 2023. This clinical conference was organised by the International Patient Organisation for Primary Immunodeficiencies (IPOPI), the global patient organisation advocating for primary immunodeficiencies (PIDs) in patients. The session aimed at exploring the advances in newborn screening (NBS) for severe combined immunodeficiency, starting with the common practice and inserting the discussion into the wider perspective of genomics whilst taking into consideration the ethical aspects of screening as well as incorporating families and the public into the discussions, so as to ensure that NBS for treatable rare disorders continues to be one of the major public health advances of the 20th century...

BACKGROUND: Corynebacterium diphtheriae infection, causing diphtheria, is a public health concern, particularly in developing nations like Pakistan. Despite immunization efforts, recent outbreaks since 2022 have emphasized the continuing threat. This study focuses on describing the clinical characteristics of children with diphtheria-induced myocarditis and exploring the association between early cardiac abnormalities, future fatality rates, and contributing factors. METHODS: A one-year cross-sectional study was undertaken at Lady Reading Hospital MTI Peshawar, encompassing 73 pediatric patients diagnosed with diphtheria-associated myocarditis...

BACKGROUND: The dissemination of clinical trial results is an important scientific and ethical endeavour. This survey of completed interventional studies in a French academic center describes their reporting status. METHODS: We explored all interventional studies sponsored by Rennes University Hospital identified on the French Open Science Monitor which tracks trials registered on EUCTR or clinicaltrials.gov, and provides an automatic assessment of the reporting of results...

In the late twentieth century, increasing numbers of women in wealthy nations waited until they were aged in their 30s to give birth and become parents. This article examines responses to the changing demographics of maternity among social researchers, doctors, pregnant women and mothers in Aotearoa New Zealand. The article analyses raw research data from historical social survey projects The Right Time (interviews completed in 1982-1983) and Motherhood After 30 (1987) by the grassroots organisation the Society for Research on Women in New Zealand...

BACKGROUND: In May 2020, England moved to an opt-out organ donation system, meaning adults are presumed to be an organ donor unless within an excluded group or have opted-out. This change aims to improve organ donation rates following brain or circulatory death. Healthcare staff in the UK are supportive of organ donation, however, both healthcare staff and the public have raised concerns and ethical issues regarding the change. The #options survey was completed by NHS organisations with the aim of understanding awareness and support of the change...

INTRODUCTION: The waiting list for elective surgery in England recently reached over 7.8 million people and waiting time targets have been missed since 2010. The high-volume low complexity (HVLC) surgical hubs programme aims to tackle the backlog of patients awaiting elective surgery treatment in England. This study will evaluate the impact of HVLC surgical hubs on productivity, patient care and the workforce. METHODS AND ANALYSIS: This 4-year project consists of six interlinked work packages (WPs) and is informed by the Consolidated Framework for Implementation Research...

OBJECTIVE: This study aims to determine the moderator role of work experience in the impact of ethical culture perceptions of healthcare professionals on their whistleblowing tendencies. It is also to reveal the effect of organizational trust on whistleblowing. METHODS: The population of the study consists of health personnel working in the public or private sector in Turkey. The sample of the study consists of 481 health workers who voluntarily participated in the survey...

Antimicrobial resistance (AMR) is an urgent, global threat to public health. The development and implementation of effective measures to address AMR is vitally important but presents important ethical questions. This is a policy area requiring further sustained attention to ensure that policies proposed in National Action Plans on AMR are ethically acceptable and preferable to alternatives that might be fairer or more effective, for instance. By ethically analysing case studies of coercive actions to address AMR across countries, we can better inform policy in a context-specific manner...

OBJECTIVE: Aim: This article examines the legal challenges associated with opt-out and opt-in systems in transplantation cases. It focuses on the low public knowledge and awareness of the national transplantation system, assessing its compliance with international prerequisites for an opt-out system. The analysis centres on the "right to know" perspective and the effectiveness of opt-out in organ transplantation. . PATIENTS AND METHODS: Materials and Methods: The research methodology includes scientific principles, public surveys, relevant regulations from the Republic of Latvia and EU, and grey literature on the health system and organ donation in the EU...

The article considers issues of implementation into clinical practice the principles of 5P medicine in its part of individualization of therapeutic tactics considering genetic characteristics of patients. The analysis of studies concerning influence of allelic variations on metabolism, safety and tolerance of the most often prescribed medicinal preparations was implemented. The main assumptions of pharmacogenomics were considered. Despite broad perspective of applying obtained data in clinical practice, there are a number of unresolved problems related to accessibility of genetic testing to population, ambiguity of approaches to interpretation of obtaining results, ethical issues and legal regulation...

BACKGROUND: The digitalization in the healthcare sector promises a secondary use of patient data in the sense of a learning healthcare system. For this, the Medical Informatics Initiative's (MII) Consent Working Group has created an ethical and legal basis with standardized consent documents. This paper describes the systematically monitored introduction of these documents at the MII sites. METHODS: The monitoring of the introduction included regular online surveys, an in-depth analysis of the introduction processes at selected sites, and an assessment of the documents in use...

BACKGROUND AIMS: The marketing authorization of Advanced Therapy Medicinal Products (ATMPs) in Brazil is recent. The features of these therapies impose specialized regulatory action and are consequently challenging for developers. The goal of this study was to identify the industry's experience in clinical development, marketing authorization and access to ATMPs through the Unified Health System (SUS, acronym in Portuguese), from a regulatory perspective. METHODS: A survey containing structured questions was conducted among research participants who work at companies that commercialize ATMPs...

BACKGROUND: Chronic cancer-related pain (CRP) can have a significant negative impact on quality of life. Mindfulness is hypothesized to mitigate chronic CRP by regulating both physical and emotional resistance to pain. In recent years, there has been interest in the use of virtual reality (VR) to deliver mindfulness meditation. VR provides an immersive and engaging environment, which may enhance one's focused attention to present-moment experiences, potentially making mindfulness less effortful and more efficacious for individuals with chronic pain...

BACKGROUND: The ethical governance of Artificial Intelligence (AI) in health care and public health continues to be an urgent issue for attention in policy, research, and practice. In this paper we report on central themes related to challenges and strategies for promoting ethics in research involving AI in global health, arising from the Global Forum on Bioethics in Research (GFBR), held in Cape Town, South Africa in November 2022. METHODS: The GFBR is an annual meeting organized by the World Health Organization and supported by the Wellcome Trust, the US National Institutes of Health, the UK Medical Research Council (MRC) and the South African MRC...

BACKGROUND: Research study participants can stop taking part early, in various circumstances. Sometimes this experience can be stressful. Providing participants with the information they want or need when they stop could improve participants' experiences, and may benefit individual studies' objectives and research in general. A group of public contributors and researchers at the Clinical Trials Research Unit, University of Leeds, aimed to develop a communication template and researcher guidance...

BACKGROUND: Healthcare providers may experience moral distress when they are unable to take the ethically or morally appropriate action due to real or perceived constraints in delivering care, and this psychological stressor can negatively impact their mental health, leading to burnout and compassion fatigue. This study describes healthcare providers experiences of moral distress working in long-term care settings during the COVID-19 pandemic and measures self-reported levels of moral distress pre- and post-implementation of the Dementia Isolation Toolkit (DIT), a person-centred care intervention designed for use by healthcare providers to alleviate moral distress...

BACKGROUND: Equity, diversity and inclusion (EDI) in the healthcare field are crucial in meeting the healthcare needs of a progressively diverse society. In fact, a diverse healthcare workforce enables culturally sensitive care, promotes health equity and enhances the understanding of various needs and patients' viewpoints, potentially resulting in more effective patient treatment and improved patient outcomes. Despite this, information on the effectiveness of policies or programmes promoting EDI in health institutions is scarce...

INTRODUCTION: Radical chemoradiotherapy represents the gold standard for locally advanced cervical cancer. However, despite significant progress in improving local tumour control, distant relapse continues to impact overall survival. The development of predictive and prognostic biomarkers is consequently important to risk-stratify patients and identify populations at higher risk of poorer treatment response and survival outcomes. Exploratory study of using Magnetic resonance Prognostic Imaging markers for Radiotherapy In Cervix cancer (EMPIRIC) is a prospective exploratory cohort study, which aims to investigate the role of multiparametric functional MRI (fMRI) using diffusion-weighed imaging (DWI), dynamic contrast-enhanced (DCE) and blood oxygen level-dependent imaging (BOLD) MRI to assess treatment response and predict outcomes in patients undergoing radical chemoradiotherapy for cervical cancer...

INTRODUCTION: Improving sustainable transportation options will help cities tackle growing challenges related to population health, congestion, climate change and inequity. Interventions supporting active transportation face many practical and political hurdles. Implementation science aims to understand how interventions or policies arise, how they can be translated to new contexts or scales and who benefits. Sustainable transportation interventions are complex, and existing implementation science frameworks may not be suitable...

OBJECTIVE: The purpose of this narrative review paper was to review the state and development of the field of donor gametes in Kazakhstan, compare its legislative and technical capabilities with other countries and identify key steps towards the establishment of a unified register of donor gametes in the Republic. MATERIALS AND METHODS: The narrative review paper conducted an analysis of scientific publications and legal documents to examine the implementation of Assisted Reproductive Technologies (ART), focusing on Donor Sexual Gametes (DSG), globally...