Ethical challenges in global research on health system responses to violence against women: a qualitative study of policy and professional perspectives
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SUBMITTER: Lewis N
PROVIDER: S-EPMC10949724 | biostudies-literature | 2024 Jan
REPOSITORIES: biostudies-literature
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| S-EPMC1989735 | biostudies-literature
Project description:BackgroundClinical trainees face challenges throughout short-term experiences in global health (STEGH) that are not routinely addressed.ObjectivesDescribe common professional and ethical dilemmas faced by clinical trainees and identify gaps and solutions for pre, during, and post-STEGH training and mentoring.MethodsWe conducted a mixed-methods study among trainees and mentors involved in global health. The study utilized focus groups with trainees (November-December 2015) and online surveys of trainees, in-country and stateside faculty mentors (October 2016-April 2017).Results85% (17/20) of students reported feeling prepared for their STEGH; however, 59% (23/39) of faculty felt students were unprepared. A majority of both students (90%) and faculty (77%) stated students would likely experience an ethical dilemma during STEGH. Major themes relating to meaningful global health work were elucidated: personal and inter-professional skills; interpersonal networks and collaboration; and awareness of power dynamics and bias.ConclusionsThe most common challenges faced by trainees during STEGH related to leadership, bias, ethics and interprofessional collaboration. Redirecting trainee energies from a focus on 'doing' and deliverables to attitudes (e.g., humility, professionalism) that cultivate personal and professional growth will help create lifelong global health learners and leaders.
| S-EPMC7101005 | biostudies-literature
Project description:BackgroundAdherence to ethical principles is a requirement for palliative care delivery to children and a main concern of healthcare providers. Physicians usually face ethical challenges during their daily practice in hospitals and need adequate skills and the ability to identify and manage them. This study sought to explore the ethical challenges of palliative care from the perspectives of pediatricians.MethodsThis qualitative study was conducted between April and July 2019 using the content analysis approach. Participants were fifteen pediatric medical residents, specialists, and subspecialists purposively recruited from pediatric hospitals in Tehran, Iran. Data were collected using in-depth semi-structured interviews and were analyzed using Graneheim and Lundman's approach to conventional content analysis. Trustworthiness was ensured through the four criteria proposed by Guba and Lincoln.ResultsParticipants' experiences of the ethical challenges of palliative care for children were grouped into two main categories, namely "bewilderment in dealing with children and their families" (with two subcategories) and "conflicts in decision making" (with three subcategories). The final five subcategories were: (a) inability to effectively communicate with children and their families, (b) inability to tell the truth about the disease, (c) physician-parent conflicts, (d) parent-child conflicts, and (e) physician-physician conflicts.ConclusionThe main ethical challenges of palliative care from the perspectives of Iranian pediatricians are the inability to effectively communicate with children and their families, the inability to tell them the truth, and the inability to manage physician-parent, parent-child, and physician-physician conflicts. Identification and management of these challenges may help improve the quality of pediatric palliative care in Iran. Further studies are needed to confirm these findings in other settings.
| S-EPMC9464941 | biostudies-literature
Project description:BackgroundObservational studies using large-scale databases and biobanks help improve prevention and treatment of sudden cardiac arrest (SCA) but the lack of guidance on data protection issues in this setting may harm patients' rights and the research enterprise itself. This qualitative study explored the ethical aspects of observational SCA research, as well as solutions.MethodsEuropean experts in SCA research, medical ethics and health law reflected on this topic through semi-structured interviews (N = 29) and a virtual roundtable conference (N = 18). The ESCAPE-NET project served as a discussion case. Findings were coded and thematically analysed.ResultsThe first theme concerned the potential benefits and harms (at individual and group level) of observational data-based SCA studies and included the following sub-themes: societal value, scientific validity, data privacy, disclosure of genetic findings, stigma and discrimination, and medicalisation of sudden death. The second theme involved governance through 'privacy by design', 'privacy by policy' and associated regulation and oversight. Sub-themes were: de-identification of data, informed consent (broad and deferred), ethics review, and harmonisation.ConclusionsResearchers and scientific societies should be aware that ethico-legal issues may arise during data-driven studies in SCA and other emergencies. These can be mitigated by combining technical data protection safeguards with appropriate informed consent policies and proportional ethics oversight. To ensure responsible conduct of data research in emergency medicine, we recommend the establishment of 'codes of conduct' which should be developed in interdisciplinary groups and together with patient representatives.
| S-EPMC10285638 | biostudies-literature
Project description:BACKGROUND:Non-Invasive Prenatal Testing (NIPT) is a technology which provides information about fetal genetic characteristics (including sex) very early in pregnancy by examining fetal DNA obtained from a sample of maternal blood. NIPT is a morally complex technology that has advanced quickly to market with a strong push from industry developers, leaving many areas of uncertainty still to be resolved, and creating a strong need for health policy that reflects women's social and ethical values. We approach the need for ethical policy-making by studying the use of NIPT and emerging policy in the province of Ontario, Canada. METHODS:Using an adapted version of constructivist grounded theory, we conducted interviews with 38 women who have had personal experiences with NIPT. We used an iterative process of data collection and analysis and a staged coding strategy to conduct a descriptive analysis of ethics issues identified implicitly and explicitly by women who have been affected by this technology. RESULTS:The findings of this paper focus on current ethical issues for women seeking NIPT, including place in the prenatal pathway, health care provider counselling about the test, industry influence on the diffusion of NIPT, consequences of availability of test results. Other issues gain relevance in the context of future policy decisions regarding NIPT, including funding of NIPT and principles that may govern the expansion of the scope of NIPT. These findings are not an exhaustive list of all the potential ethical issues related to NIPT, but rather a representation of the issues which concern women who have personal experience with this test. CONCLUSIONS:Women who have had personal experience with NIPT have concerns and priorities which sometimes contrast dramatically with the theoretical ethics literature. These findings suggest the importance of engaging patients in ethical deliberation about morally complex technologies, and point to the need for more deliberative patient engagement work in this area.
| S-EPMC5902938 | biostudies-literature
Project description:Deciding which climate policies to enact, and where and when to enact them, requires weighing their costs against the expected benefits. A key challenge in climate policy is how to value health impacts, which are likely to be large and varied, considering that they will accrue over long time horizons (centuries), will occur throughout the world, and will be distributed unevenly within countries depending in part on socioeconomic status. These features raise a number of important economic and ethical issues including how to value human life in different countries at different levels of development, how to value future people, and how much priority to give the poor and disadvantaged. In this article we review each of these issues, describe different approaches for addressing them in quantitative climate policy analysis, and show how their treatment can dramatically change what should be done about climate change. Finally, we use the social cost of carbon, which reflects the cost of adding carbon emissions to the atmosphere, as an example of how analysis of climate impacts is sensitive to ethical assumptions. We consider $20 a reasonable lower bound for the social cost of carbon, but we show that a much higher value is warranted given a strong concern for equity within and across generations.
| S-EPMC7891186 | biostudies-literature
Project description:Phylogenetic analysis of pathogens is an increasingly powerful way to reduce the spread of epidemics, including HIV. As a result, phylogenetic approaches are becoming embedded in public health and research programmes, as well as outbreak responses, presenting unique ethical, legal, and social issues that are not adequately addressed by existing bioethics literature. We formed a multidisciplinary working group to explore the ethical issues arising from the design of, conduct in, and use of results from HIV phylogenetic studies, and to propose recommendations to minimise the associated risks to both individuals and groups. We identified eight key ethical domains, within which we highlighted factors that make HIV phylogenetic research unique. In this Review, we endeavoured to provide a framework to assist researchers, public health practitioners, and funding institutions to ensure that HIV phylogenetic studies are designed, done, and disseminated in an ethical manner. Our conclusions also have broader relevance for pathogen phylogenetics.
| S-EPMC7327184 | biostudies-literature
Project description:In recent years, phylogenetic analysis of HIV sequence data has been used in research studies to investigate transmission patterns between individuals and groups, including analysis of data from HIV prevention clinical trials, in molecular epidemiology, and in public health surveillance programs. Phylogenetic analysis can provide valuable information to inform HIV prevention efforts, but it also has risks, including stigma and marginalization of groups, or potential identification of HIV transmission between individuals. In response to these concerns, an interdisciplinary working group was assembled to address ethical challenges in US-based HIV phylogenetic research. The working group developed recommendations regarding (1) study design; (2) data security, access, and sharing; (3) legal issues; (4) community engagement; and (5) communication and dissemination. The working group also identified areas for future research and scholarship to promote ethical conduct of HIV phylogenetic research.
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Project description:It is well known that victims of intimate partner violence experience numerous barriers to leaving abusive relationships. For ethnic minority and immigrant women these barriers are significantly exacerbated. This metasynthesis explored barriers to help-seeking as experienced by Black, Asian, minority ethnic and immigrant women with experience of intimate partner violence. A review of worldwide literature published in English in peer-reviewed journals on this topic from 2000 to July 2020 produced 2597 relevant articles. After removing duplicates and applying the exclusion criteria, a total of 47 articles were selected for inclusion in the review. The synthesis found that these women faced additional barriers as a result of institutional racism, immigration laws, culture and religion, and issues of cultural competence, and lack of diversity within frontline services. Such barriers, from a range of formal and informal resources, services and other mechanisms of support, served to exacerbate feelings of fear, threat, isolation and powerlessness. The barriers were also further weaponised by perpetrators in order to extend their reign of terror and control. As a result, women were caught in a double-bind - stay in an abusive relationship or face further threats and consequences if they attempted to leave. Whilst our search criteria focused on barriers to help-seeking, many of the papers included in our synthesis also explored facilitators to help-seeking, which are included in our findings and overwhelmingly relate to informal support from females.
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Project description:Priority question exercises are increasingly used to frame and set future research, innovation and development agendas. They can provide an important bridge between the discoveries, data and outputs generated by researchers, and the information required by policy makers and funders. Microbial biofilms present huge scientific, societal and economic opportunities and challenges. In order to identify key priorities that will help to advance the field, here we review questions from a pool submitted by the international biofilm research community and from practitioners working across industry, the environment and medicine. To avoid bias we used computational approaches to group questions and manage a voting and selection process. The outcome of the exercise is a set of 78 unique questions, categorized in six themes: (i) Biofilm control, disruption, prevention, management, treatment (13 questions); (ii) Resistance, persistence, tolerance, role of aggregation, immune interaction, relevance to infection (10 questions); (iii) Model systems, standards, regulatory, policy education, interdisciplinary approaches (15 questions); (iv) Polymicrobial, interactions, ecology, microbiome, phage (13 questions); (v) Clinical focus, chronic infection, detection, diagnostics (13 questions); and (vi) Matrix, lipids, capsule, metabolism, development, physiology, ecology, evolution environment, microbiome, community engineering (14 questions). The questions presented are intended to highlight opportunities, stimulate discussion and provide focus for researchers, funders and policy makers, informing future research, innovation and development strategy for biofilms and microbial communities.
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