Primary Care Physicians' and Patients' Perspectives on Equity and Health Security of Infectious Disease Digital Surveillance.

PURPOSE: The coronavirus disease 2019 (COVID-19) pandemic facilitated the rapid development of digital detection surveillance (DDS) for outbreaks. This qualitative study examined how DDS for infectious diseases (ID) was perceived and experienced by primary care physicians and patients in order to highlight ethical considerations for promoting patients' autonomy and health care rights. METHODS: In-depth interviews were conducted with a purposefully selected group of 16 primary care physicians and 24 of their patients. The group was reflective of a range of ages, educational attainment, and clinical experiences from urban areas in northern and southern China. Interviews were audio recorded, transcribed, and translated. Two researchers coded data and organized it into themes. A third researcher reviewed 15% of the data and discussed findings with the other researchers to assure accuracy. RESULTS: Five themes were identified: ambiguity around the need for informed consent with usage of DDS; importance of autonomous decision making; potential for discrimination against vulnerable users of DDS for ID; risk of social inequity and disparate care outcomes; and authoritarian institutions' responsibility for maintaining health data security. The adoption of DDS meant some patients would be reluctant to go to the hospital for fear of either being discriminated against or forced into quarantine. Certain groups (older people and children) were thought to be vulnerable to DDS misappropriation. CONCLUSIONS: These findings indicate the paramount importance of establishing national and international ethical frameworks for DDS implementation. Frameworks should guide all aspects of ID surveillance, addressing privacy protection and health security, and underscored by principles of social equity and accountability.Annals "Online First" article.

Implementation research: Road map from research to practice.

The challenge today is to make sure that the evidence available gets implemented for betterment of human wellbeing. The research which is closely associated with implementation, challenges and outcome of evidence in real life scenario is Implementation research (IR). The current prespective explains why there is a focus on IR by all icluding researchers, practitioners and policy makers. The approaches and study designs commonly used in the IR have been described. The IR is multi-disciplinary, multilevel and contextual in nature. The outcomes in IR are proximal. The article further describes the ethical issue and the way forward for IR. We need to do capacity building of practitioners, researchers and policymakers in IR.

Ethical issues in oncology practice: a qualitative study of stakeholders' experiences and expectations.

BACKGROUND: Clinical Ethics Support Services (CESS) have been established to support healthcare professionals in addressing ethically sensitive issues in clinical practice and, in many countries, they are under development. In the context of growing CESS, exploring how healthcare professionals experience and address clinical ethics issues in their daily practice represents a fundamental step to understand their potential needs. This is even more relevant in the context of extremely sensitive diseases, such as cancer. On this basis, we carried out a qualitative study conducting in-depth semi-structured interviews with stakeholders of a major comprehensive cancer centre in Italy, with the twofold aim of investigating what ethical issues arise in the context of clinical oncology and how they are addressed, as well as stakeholders' expectations about a potential CESS to be implemented within the Institution. METHODS: The study was conducted within the theoretical framework of Grounded Theory. Participants were healthcare professionals and other key stakeholders working within the cancer centre. The semi-structured interview aimed at exploring common ethical aspects of oncology, investigating stakeholders' professional experience in dealing with clinical ethics issues, their expectations and requests regarding ethics support services. Transcripts of the interviews were coded and analysed according to the principles of Grounded Theory. RESULTS: Twenty-one stakeholders were interviewed. Our analysis showed a wide consensus on the identification of ethically relevant issues, above all those concerning communication, end-of-life, and resource allocation. The absence of institutional tools or strategies to address and manage ethical issues at the patient bedside emerged, and this is reflected in the widespread request for their development in the future. The ideal support service should be fast and flexible in order to adapt to different needs and clinical cases. CONCLUSIONS: The interviewees showed a limited degree of 'ethical awareness': despite having reported many issues in clinical practice, they could hardly identify and describe the ethical aspects, while  complaining about a lack of ethical resources in their management. To build a truly effective support service, it therefore seems appropriate to take such context into consideration and address the emerged needs. Ethical sensitivity seems to be key and it becomes even more relevant in critical clinical areas, such as the therapeutic pathways of terminally ill patients.

[Ethical issues of vaccination against Sars-CoV-2]. / Enjeux éthiques de la vaccination contre le Sars-CoV-2.

As a tool for public health, the vaccination policy is based on the analysis of benefits and risks. Thus, the National Consultative Ethics Committee has been at the heart of the orientations taken in terms of the deployment of the vaccination against severe acute respiratory syndrome coronavirus 2, by contributing its reflections on the associated ethical issues.

A comprehensive approach to stool donor screening for faecal microbiota transplantation in China.

BACKGROUND: Faecal microbiota transplantation (FMT) is an effective therapy for recurrent Clostridium difficile infections and chronic gastrointestional infections. However, the risks of FMT and the selection process of suitable donors remain insufficiently characterized. The eligibility rate for screening, underlying microbial basis, and core ethical issues of stool donors for FMT are yet to be elucidated in China. RESULTS: The potential stool donors were screened from December 2017 to December 2019 with the help of an online survey, clinical assessments, and stool and blood testing. Bioinformatics analyses were performed, and the composition and stability of gut microbiota in stool obtained from eligible donors were dynamically observed using metagenomics. Meanwhile, we build a donor microbial evaluation index (DoMEI) for stool donor screening. In the screening process, we also focused on ethical principles and requirements. Of the 2071 participants, 66 donors were selected via the screening process (3.19% success rate). Although there were significant differences in gut microbiota among donors, we found that the changes in the gut microbiota of the same donor were typically more stable than those between donors over time. CONCLUSIONS: DoMEI provides a potential reference index for regular stool donor re-evaluation. In this retrospective study, we summarised the donor recruitment and screening procedure ensuring the safety and tolerability for FMT in China. Based on the latest advances in this field, we carried out rigorous recommendation and method which can assist stool bank and clinicians to screen eligible stool donor for FMT.

Application of Optogenetics in Epilepsy Research.

Epilepsy is a disease characterized by seizures arising from paroxysmal and self-limited hypersynchrony of neurons. However, the mechanism by which the normal brain develops epilepsy, which involves a chronic process of structural and morphological changes known as epileptogenesis, is not fully understood. Optogenetics involves the use of genetic engineering and optics to monitor or control nerve cell activity. Compared to classical electrophysiological experiments, the application of optogenetics in epilepsy research has many advantages because it allows selective photic stimulation of cell types and electrical observation without introducing artifacts.

Residents and patients benefit from surgical simulation on a live porcine model, could we consider it as ethical?

INTRODUCTION: The objective was to evaluate, by self-questionnaire, the feeling of participants in surgical training sessions on a live porcine model. METHODS: A computerized questionnaire (GoogleForm ©) was sent to the members of the French Association of Urologists-in-Training (AFUF) (fellows and residents). Only questionnaires from Urologists-in-training who had participated in surgical training sessions were included. The sessions consisted of performing surgeries such as laparoscopic nephrectomies or laparoscopic cystectomies. RESULTS: Overall, 198 met the inclusion criteria. A total of 36.4% (72/198) of the participants were fellows and 63.6% (126/198) were residents. According to the participants, the main interest of sessions was to be able to train for emergency situations. A total of 79.8% (158/198) of the participants wanted surgical simulation to become compulsory. To their opinion, the main advantage of surgical simulation on a live porcine model was: technical progress in 87.4% (173/198) of cases. A total of 13.1% (26/198) of the participants found it was unethical to perform the first technical procedures on live animal models. A total of 65.7% (130/198) of the participants considered that there is currently no system of substitution. CONCLUSION: For the participants, surgical training on a live porcine model allows technical progress while training for serious emergency situations. Surgeons and patients could benefit from this risk-free mock surgical scenario. LEVEL OF EVIDENCE: 3.

Organ transplantation and donation from the point of view of medical students in Iran: Ethical aspects and knowledge.

Organ transplantation is an effective process that prolongs the lives of individuals suffering from incapacitating conditions. The aim of this study was to evaluate the view point of medical students in Iran regarding ethical aspects and knowledge on organ transplantation and donation. The participants included 165 medical students from different faculties of Shahid Beheshti University of Medical Sciences, Tehran, Iran. They were assessed using a reliable questionnaire that examined their ethical aspects and knowledge regarding organ transplantation and donation. All data analyses were performed using Chi-square and analysis of variance tests with SPSS software. Results showed that main sources of respondents' knowledge on organ transplantation and donation were TV, 51.52 % (n = 85) and Internet, 19.39 % (n = 32). 91.51% (n = 151) of the respondents understand and 8.48% (n =14) do not understand the concept of brain death. 49.69% (n = 82) of the respondents were willing to donate their organs. A brain death donor was selected by respondents as the best option for organs transplantation (72.12%; n = 119). The respondents selected young patients as the preferred recipients of an organ (69.69%; n = 115). There was no correlation between gender, age, educational level, marital status and attitude towards organ transplantation. From the results, there is need for an organized educational planning for medical students in ethical issue and knowledge on organ and tissue transplantation.

Fifty years of newborn screening.

Newborn screening has evolved fast following recent advances in diagnosis and treatment of disease, particularly the development of multiplex testing and applications of molecular testing. Formal evidence of benefit from newborn screening has been largely lacking, due to the rarity of individual disorders. There are wide international differences in the choice of disorders screened, and ethical issues in both screening and not screening are apparent. More evidence is needed about benefit and harm of screening for specific disorders and renewed discussion about the basic aims of newborn screening must be undertaken.

Australians' knowledge and perceptions of direct-to-consumer personal genome testing.

BACKGROUND: As direct-to-consumer personal genome testing (DTC-PGT) is increasingly available in Australia, knowledge of Australians' perceptions and attitudes towards this technology is needed in order to assess the (potential) impact it might have on the Australian public and healthcare system. AIMS: To explore the knowledge and perceptions of DTC-PGT in an Australian sample. METHODS: An online survey asking about knowledge and perceptions of DTC-PGT, undertaken between October 2011 and April 2012, of 270 Australian residents. Results were analysed using SAS. RESULTS: Our study found limited consumer knowledge of, and interest in, pursuing DTC-PGT in Australia. Ninety-three per cent of respondents correctly identified DTC-PGT as available to consumers directly, but only 40% correctly identified its availability in Australia. When asked about the content and value of the information DTC-PGT provides, the majority of respondents indentified that DTC-PGT could provide information about one's health and/or ancestry (82% and 74%). Additionally, respondents indicated they believed this information to be equally important as non-genetic information about one's ancestry and health. CONCLUSION: While a minority of respondents expressed an intention to pursue DTC-PGT (27%), the majority of respondents, irrespective of whether they wished to pursue it or not, believed that genetic information was as important as non-genetic information in regards to their health and their ancestry. The value ascribed to genetic information suggests that genetics plays a role in people's lives, and that further qualitative research could explore the ways in which people might use and understand the genetic information provided by DTC-PGT.

Change in Rhetoric but not in Action? Framing of the Ethical Issue of Modern Slavery in a UK Sector at High Risk of Labor Exploitation.

This article shows how the ethical framing of the contemporary issue of modern slavery has evolved in UK construction, a sector in which there is a high risk of labor exploitation. It also examines how these framing dynamics have inhibited the emergence of a common framework of action to deal with the issue. We draw on both framing theory and the literature on the discursive construction of moral legitimacy. Our longitudinal analysis reveals that actors seeking to shape the debate bring their own moral schemes to justify and construct the legitimacy of their frames. Actors cluster their views around five evolving frames: human rights issue (later shifting to hidden crime), moral issue, management issue (later shifting to human moral obligation), social justice issue, and decent work issue-which promote particular normative evaluations of what the issue is, who is responsible, and recommendations for action. Our study contributes to a dynamic and political understanding of the meaning making of modern slavery. We identify the antecedents and conditions that have forestalled the emergence of new patterns of action to tackle modern slavery in the UK construction sector thereby evidencing the effects of the interplay of morally competing frames on field-level change. Supplementary Information: The online version contains supplementary material available at 10.1007/s10551-021-05013-w.

Supporting Birthing People and Supporting Doulas: The Impact of the COVID-19 Pandemic on a Community-Based Doula Organization in San Francisco.

Background: Beginning in March 2020, health care systems in the United States restricted the number of support people who could be present during pregnancy-related care to reduce the spread of COVID-19. We aimed to describe how SisterWeb, a community-based doula organization that employs Black, Pacific Islander, and Latinx doulas in San Francisco, California, adapted to the COVID-19 pandemic. Methods: As part of process and outcome evaluations conducted through an academic-community partnership, we interviewed SisterWeb doulas, mentors, and leaders in 2020, 2021, and 2022 (n=26 interviews). We identified preliminary themes using the Rapid Assessment Process and then conducted thematic analysis of data related to COVID-19. Results: SisterWeb leadership remained committed to safeguarding doulas by shifting to virtual support until doulas were onboarded as benefitted employees. Doulas reported hospital policies impacted clients' pregnancy-related care. Initially, doulas adapted to virtual support by connecting with clients more frequently through phone and text. When permitted to meet in person, doulas adjusted to client preference. Finally, as the pandemic impacted doulas' well-being, they turned to mentors for emotional support. Discussion and Health Equity Implications: This analysis contributes to a growing body of literature describing doulas' experiences during the pandemic. By shifting to virtual support, SisterWeb leaders prioritized the health, safety, and financial stability of doulas, who were members of communities disproportionately impacted by COVID-19. Our findings suggest that public health guidance, organizational COVID-19 precautions, and hospital policies hindered SisterWeb's goal of ensuring clients receive equitable medical care. In addition, we found that emotional support for doulas is vital to their work.

Mitochondrial transplantation as a promising therapy for mitochondrial diseases.

Mitochondrial diseases are a group of inherited or acquired metabolic disorders caused by mitochondrial dysfunction which may affect almost all the organs in the body and present at any age. However, no satisfactory therapeutic strategies have been available for mitochondrial diseases so far. Mitochondrial transplantation is a burgeoning approach for treatment of mitochondrial diseases by recovery of dysfunctional mitochondria in defective cells using isolated functional mitochondria. Many models of mitochondrial transplantation in cells, animals, and patients have proved effective via various routes of mitochondrial delivery. This review presents different techniques used in mitochondrial isolation and delivery, mechanisms of mitochondrial internalization and consequences of mitochondrial transplantation, along with challenges for clinical application. Despite some unknowns and challenges, mitochondrial transplantation would provide an innovative approach for mitochondrial medicine.

Approach to Management of Wandering in Dementia: Ethical and Legal Issue.

Wandering behavior is one of the most important and challenging management aspects in persons with dementia. Wandering behavior in people with dementia (PwD) is associated with an increased risk of falls, injuries, and fractures, as well as going missing or being lost from a facility. This causes increased distress in caregivers at home and in healthcare facilities. The approach to the comprehensive evaluation of the risk assessment, prevention, and treatment needs more strengthening and effective measures as the prevalence of wandering remains high in the community. Both the caregiver and clinicians need a clear understanding and responsibility of ethical and legal issues while managing and restraining the PwD. Ethical and legal issues especially in the light of the new Indian Mental Healthcare Act of 2017, related to confinement by family members in their homes by family caregivers, seclusion, physical or chemical restraints, other pharmacological and behavioral treatment, highlighting their effectiveness as well as adverse consequences are discussed. This article attempts to address an approach in managing wandering behavior in PwD in light of MHCA, 2017.

Experience of Indonesian medical students of ethical issues during their clinical clerkship in a rural setting.

Although ethics is an essential part of medical education, little attention has been paid to ethics education during the clerkship phase, where medical students observe how physicians make decisions regarding various ethical problems. Specific nuances and cultural contexts such as working in a rural setting can determine ethical issues raised. This phenomenology study aimed to explore ethical issues experienced by Indonesian students during clinical clerkship in a rural setting. In-depth interviews were used to explore students' experiences. Participants were ten students, selected on gender and clerkship year variations. Data saturation was reached after eight interviews, followed by two additional interviews. Thematic analysis was used in this study, and trustworthiness was ensured through data and investigator triangulation, member checking, and audit trail. Three main themes found in this study were limited facilities and resources, healthcare financing and consent issues, as well as unprofessional behavior of healthcare providers. Many ethical issues related to substandard care were associated to limited resources and complexities within the healthcare system in the rural setting. Early exposure to recurrent ethical problems in healthcare can help students prepare for their future career as a physician in a rural setting.

Ethics of Gamification in Health and Fitness-Tracking.

The use of game-like elements is become increasingly popular in the context of fitness and health apps. While such "gamified" apps hold great potential in motivating people to improve their health, they also come with a "darker side". Recent work suggests that these gamified health apps raise a number of ethical challenges that, if left unaddressed, are not only morally problematic but also have adverse effects on user health and engagement with the apps. However, studies highlighting the ethical challenges of gamification have also met with criticism, indicating that they fall short of providing guidance to practitioners. In avoiding this mistake, this paper seeks to advance the goal of facilitating a practice-relevant guide for designers of gamified health apps to address ethical issues raised by use of such apps. More specifically, the paper seeks to achieve two major aims: (a) to propose a revised practice-relevant theoretical framework that outlines the responsibilities of the designers of gamified health apps, and (b) to provide a landscape of the various ethical issues related to gamified health apps based on a systematic literature review of the empirical literature investigating adverse effects of such apps.

Cognitive Interaction Technology in Sport-Improving Performance by Individualized Diagnostics and Error Prediction.

The interdisciplinary research area Cognitive Interaction Technology (CIT) aims to understand and support interactions between human users and other elements of socio-technical systems. Important reasons for the new interest in understanding CIT in sport psychology are the impressive development of cognitive robotics and advanced technologies such as virtual or augmented reality systems, cognitive glasses or neurotechnology settings. The present article outlines this area of research, addresses ethical issues, and presents an empirical study in the context of a new measurement and assessment system for training in karate. Recent advances in the field of cognitive assistance systems enabled largely automatized assessments of individual mental representation structures for action sequences, such as choreographed movement patterns in dance or martial arts. Empirical investigations with karate practitioners of different skill levels demonstrate that advanced software-based survey and algorithmic analysis procedures based on cognitive models generate individualized performance predictions for a movement sequence from the Kanku-dai kata (a pre-defined karate movement sequence), which correlated significantly not only with formal expertise (kyu/dan rank) but also with the actual likelihood of mistakes in action execution. This information could prospectively be used to define individual training goals for deliberate practice and incorporated into cognitive interaction technology to provide appropriate feedback. We argue that the development of cognitive interaction systems for sport should explicitly take ethical issues into consideration and present a particular developed engineering approach. The potential benefits of such an assistance system for intermediate and advanced practitioners include more effective and flexible practice, as well as supportive effects, and more flexible training schedules. Furthermore, we argue that researchers from the field of sport psychology can benefit from advances in technological systems that enhance the understanding of mental and motor control in skilled voluntary action.

Ethical considerations of cellular immunotherapy for cancer.

With the rapid development of immunology, molecular biology, and associated technologies such as next-generation sequencing, cellular immunotherapy has recently become the fourth major cancer treatment. Immunotherapies based on T cells, natural killer cells, and dendritic cells play key roles in cancer immunotherapy. However, their application in clinical practice raises several ethical issues. Thus, studies should focus on proper adherence to basic ethical principles that can effectively guide and solve related clinical problems in the course of treatment, improve treatment effects, and protect the rights and interests of patients. In this review, we discuss cellular immunotherapy-related ethical issues and highlight the ethical practices and current status of cellular immunotherapy in China. These considerations may supplement existing ethical standards in cancer immunotherapy.

Ethical challenges of outcome measurement in palliative care clinical practice: a systematic review of systematic reviews.

Several outcome measures have been systematically implemented to be used in palliative care. However, routine use in clinical practice is not without ethical challenges, which are not commonly addressed. The objectives of this study are therefore (I) to identify the ethical challenges/issues of outcome measurement in palliative care and (II) to understand how these ethical challenges/issues are addressed in palliative care clinical practice. The study consisted of a systematic review of systematic reviews, which is a type of review that brings together a summary of reviews in one place. We searched PubMed, Web of Science, EBSCOhost searching CINAHL Complete, MEDLINE Complete, Nursing & Allied Health Collection: Comprehensive, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Cochrane Methodology Register, Library, Information Science & Technology Abstracts, MedicLatina, from inception to January 2018. Out of 159 articles screened, only two [2] articles were included for analysis. The main ethical challenge/issue identified in these two reviews was cognitive impairment, particularly in patients with dementia. This challenge was addressed via proxy (family carers or health professionals) reporting outcome measurement. Ethical challenges/issues are poorly addressed in the existing systematic reviews about outcome measurement in palliative care clinical practice. Only two systematic reviews addressed ethical challenges/issues, namely cognitive impairment, particularly in persons with dementia. Further research is needed on this subject and to foster the use of outcome measurement among this vulnerable group of patients.

Lethal fetal abnormalities: how to approach perinatal palliative care?

OBJECTIVE: Some of the antenatally diagnosed fetal pathologies are unlikely to get compatible with life. Still some women choose to continue with pregnancy. Subsequently, perinatal palliative care (PPC) has become a constructive demarche in such situations. Our study, based on a multicentric survey, reports some cases of fetal pathologies considered as lethal according to perinatal professionals and reveals the decisional process in each case. METHODS: We sent by emails a questionnaire to 434 maternal-fetal medicine specialists and fetal care pediatric specialists at 48 multidisciplinary centers for prenatal diagnosis. RESULTS: The participation rate was 49.3%. In total, 61 obstetric-gynecologists and 68 neonatologists completed the survey. The results showed that 35.4% of the pregnant women asked for the continuation of pregnancy and 24.7% asked for the termination of pregnancy. More than half of professionals (52.9%) took the initiative of informing women about the options for birth support (including PPC), while 32.7% of obstetric gynecologists did not take this initiative versus 10.2% of neonatologists (p < 0.01). CONCLUSION: This study demonstrates the absolute need to provide PPC training for professionals and to standardize its practices.