-
Indian Journal of Medical Ethics 2024This article looks at the October 2023 war on Gaza in the context of the effects of wars on healthcare systems. I will begin with a brief historical overview of the...
This article looks at the October 2023 war on Gaza in the context of the effects of wars on healthcare systems. I will begin with a brief historical overview of the so-called Israeli-Palestinian conflict to clarify the special status of the Gaza Strip and the hostilities since October 7, 2023. This will be followed by a description of the major distinguishing characteristic of this war, namely, the systematic assault on the healthcare system. Finally, I will attempt to explain the conduct of this war using a necropolitical lens.
Topics: Humans; Middle East; Israel; Delivery of Health Care; Arabs; Warfare; Armed Conflicts; Politics
PubMed: 38755772
DOI: 10.20529/IJME.2024.004 -
Indian Journal of Medical Ethics 2024Evaluating publication trends in a research area helps assess organised scientific efforts in the particular academic field. This study aims to evaluate and compare... (Comparative Study)
Comparative Study Review
BACKGROUND
Evaluating publication trends in a research area helps assess organised scientific efforts in the particular academic field. This study aims to evaluate and compare trends in medical ethics publications in the Eastern Mediterranean Region (EMRO) countries.
METHODS
A scoping review was conducted to identify publication trends of Iranian and EMRO medical ethicists. Databases were searched, including Web of Sciences, Scopus, and PubMed for English language articles, which were published by countries in the World Health Organization EMRO regions. Iranian articles were searched in Persian and English language databases. The search strategy for the bioethics filter created by the Kennedy Institute of Ethics. Duplicate entries, tertiary publications and grey literature were excluded. All retrieved articles were categorised into ten main groups. Citavi software® was used for categorising and extracting articles' information.
RESULTS
A total of 1835 English and Persian articles were obtained. Most (1211, 66%) Iranian publications in medical ethics were in Persian, and the rest (624, 34%) were in English. Most (306, 64.42%) of the published English articles in the EMRO region were authored by Iranian scholars, followed by those from Saudi Arabia (52, 10.95%), Oman (40, 8.42%), Pakistan (28, 5.89%), Lebanon (13, 2.74%), and Egypt (12, 2.53%).
CONCLUSION
The results of this study show that the trend of publication of EMRO countries, especially Iranian publications, is insufficient to respond to national demands in medical ethics. A concept map has been presented to determine research needs in medical ethics. Focusing on national and regional research potentials could synergistically affect medical ethics progress in the EMRO region.
Topics: Iran; Humans; Ethics, Medical; Publishing; Bibliometrics; Mediterranean Region; Middle East; Publications
PubMed: 38755769
DOI: 10.20529/IJME.2024.008 -
Indian Journal of Medical Ethics 2024Saviour babies or saviour siblings are conceived specifically to be sources of biological materials - ranging from cord blood, stem cells or even organs - to save...
Saviour babies or saviour siblings are conceived specifically to be sources of biological materials - ranging from cord blood, stem cells or even organs - to save another child, usually an older sibling, who is suffering from a disease like thalassemia that can be cured with this biological material. In 2020, the media reported about the birth of India's first saviour baby, in the state of Gujarat [1]. In January 2023, there was a report of the birth of another saviour baby, in the state of Maharashtra [2]. Ethical concerns relating to saviour siblings find a place in the western bioethics discourse. However, it is little discussed in the Indian context.
Topics: Humans; India; Siblings; Female; Thalassemia
PubMed: 38755767
DOI: 10.20529/IJME.2024.012 -
Neurotherapeutics : the Journal of the... May 2024We evaluated the HIV-1 DNA reservoir in peripheral blood mononuclear cells (PBMC) and cerebrospinal fluid (CSF) in people with HIV (PWH) and associations to cognitive...
We evaluated the HIV-1 DNA reservoir in peripheral blood mononuclear cells (PBMC) and cerebrospinal fluid (CSF) in people with HIV (PWH) and associations to cognitive dysfunction. Using the intact proviral DNA assay (IPDA), an emerging technique to identify provirus that may be the source of viral rebound, we assessed HIV DNA in CSF and PBMC in PWH regardless of antiretroviral therapy (ART). CSF was used as a sampling surrogate for the central nervous system (CNS) as opposed to tissue. IDPA results (3' defective, 5' defective, and intact HIV DNA) were analyzed by compartment (Wilcoxon signed rank; matched and unmatched pairs). Cognitive performance, measured via a battery of nine neuropsychological (NP) tests, were analyzed for correlation to HIV DNA (Spearman's rho). 11 CSF and 8 PBMC samples from PWH were evaluated both unmatched and matched. Total CSF HIV DNA was detectable in all participants and was significantly higher than in matched PBMCs (p = 0.0039). Intact CSF HIV DNA was detected in 7/11 participants and correlated closely with those in PBMCs but tended to be higher in CSF than in PBMC. CSF HIV DNA did not correlate with global NP performance, but higher values did correlate with worse executive function (p = 0.0440). Intact HIV DNA is frequently present in the CSF of PWH regardless of ART. This further supports the presence of an HIV CNS reservoir and provides a method to study CNS reservoirs during HIV cure studies. Larger studies are needed to evaluate relationships with CNS clinical outcomes.
PubMed: 38749843
DOI: 10.1016/j.neurot.2024.e00373 -
JMIR Formative Research May 2024Lesbian, gay, bisexual, transgender, and queer (LGBTQ+) people are at higher risk of mental health problems due to widespread hetero- and cisnormativity, including...
BACKGROUND
Lesbian, gay, bisexual, transgender, and queer (LGBTQ+) people are at higher risk of mental health problems due to widespread hetero- and cisnormativity, including negative public attitudes toward the LGBTQ+ community. In addition to combating social exclusion at the societal level, strengthening the coping abilities of young LGBTQ+ people is an important goal.
OBJECTIVE
In this transdiagnostic feasibility study, we tested a 6-week internet intervention program designed to increase the ability of nonclinical LGBTQ+ participants to cope with adverse events in their daily lives. The program was based on acceptance and commitment therapy principles.
METHODS
The program consists of 6 web-based modules and low-intensity assistance for homework provided by a single care provider asynchronously. The design was a single-group assignment of 15 self-identified LGB community members who agreed to participate in an open trial with a single group (pre- and postintervention design).
RESULTS
Before starting the program, participants found the intervention credible and expressed high satisfaction at the end of the intervention. Treatment adherence, operationalized by the percentage of completed homework assignments (32/36, 88%) was also high. When we compared participants' pre- and postintervention scores, we found a significant decrease in clinical symptoms of depression (Cohen d=0.44, 90% CI 0.09-0.80), social phobia (d=0.39, 90% CI 0.07-0.72), and posttraumatic stress disorder (d=0.30, 90% CI 0.04-0.55). There was also a significant improvement in the level of self-acceptance and behavioral effectiveness (d=0.64, 90% CI 0.28-0.99) and a significant decrease in the tendency to avoid negative internal experiences (d=0.38, 90% CI 0.09-0.66). The level of general anxiety disorder (P=.11; d=0.29, 90% CI -0.10 to 0.68) and alcohol consumption (P=.35; d=-0.06, 90% CI -0.31 to 0.19) were the only 2 outcomes for which the results were not statistically significant.
CONCLUSIONS
The proposed web-based acceptance and commitment therapy program, designed to help LGBTQ+ participants better manage emotional difficulties and become more resilient, represents a promising therapeutic tool. The program could be further tested with more participants to ensure its efficacy and effectiveness.
TRIAL REGISTRATION
ClinicalTrials.gov NCT05514964; https://clinicaltrials.gov/study/NCT05514964.
PubMed: 38749024
DOI: 10.2196/56198 -
Clinical Kidney Journal May 2024There seems to be a lack of consensus on the necessity and the modality of psychological and specifically cognitive assessment of candidates for kidney transplantation....
BACKGROUND AND HYPOTHESIS
There seems to be a lack of consensus on the necessity and the modality of psychological and specifically cognitive assessment of candidates for kidney transplantation. Both points are often delegated to individual hospitals/centres, whereas international guidelines are inconsistent. We think it is essential to investigate professionals' opinions to advance towards a consistent clinical practice.
METHODS
This paper presents the results of an international survey among clinical professionals, mainly nephrologists from the CONNECT (Cognitive decline in Nephro-Neurology: European Cooperative Target) network and beyond (i.e. from personal contacts of CONNECT members). The survey investigated their opinions about the question of whether cognitive decline in patients with chronic kidney disease may affect their eligibility for kidney transplantation.
RESULTS
Our results show that most clinicians working with patients affected by chronic kidney disease think that cognitive decline may challenge their eligibility for transplantation despite data that suggest that, in some patients, cognitive problems improve after kidney transplantation.
CONCLUSION
We conclude that three needs emerge as particularly pressing: defining agreed-on standards for a multifaceted and multifactorial assessment (i.e. including both clinical/medical and psychosocial factors) of candidates with chronic kidney disease to kidney transplantation; further investigating empirically the causal connection between chronic kidney disease and cognition; and further investigating empirically the possible partial reversibility of cognitive decline after kidney transplantation.
PubMed: 38745874
DOI: 10.1093/ckj/sfae114 -
Cureus Apr 2024In recent years, scientific discoveries in the field of neuroscience combined with developments in the field of artificial intelligence have led to the development of a... (Review)
Review
In recent years, scientific discoveries in the field of neuroscience combined with developments in the field of artificial intelligence have led to the development of a range of neurotechnologies. Advances in neuroimaging systems, neurostimulators, and brain-computer interfaces (BCIs) are leading to new ways of enhancing, controlling, and "reading" the brain. In addition, although BCIs were developed and used primarily in the medical field, they are now increasingly applied in other fields (entertainment, marketing, education, defense industry). We conducted a literature review following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines to provide background information about ethical issues related to the use of BCIs. Among the ethical issues that emerged from the thematic data analysis of the reviewed studies included questions revolving around human dignity, personhood and autonomy, user safety, stigma and discrimination, privacy and security, responsibility, research ethics, and social justice (including access to this technology). This paper attempts to address the various aspects of these concerns. A variety of distinct ethical issues were identified, which, for the most part, were in line with the findings of prior research. However, we identified two nuances, which are related to the empirical research on ethical issues related to BCIs and the impact of BCIs on international relationships. The paper also highlights the need for the cooperation of all stakeholders to ensure the ethical development and use of this technology and concludes with several recommendations. The principles of bioethics provide an initial guiding framework, which, however, should be revised in the current artificial intelligence landscape so as to be responsive to challenges posed by the development and use of BCIs.
PubMed: 38745805
DOI: 10.7759/cureus.58243 -
BMC Medical Ethics May 2024A morally sound framework for benefit-sharing is crucial to minimize research exploitation for research conducted in developing countries. However, in practice, it...
BACKGROUND
A morally sound framework for benefit-sharing is crucial to minimize research exploitation for research conducted in developing countries. However, in practice, it remains uncertain which stakeholders should be involved in the decision-making process regarding benefit-sharing and what the implications might be. Therefore the study aimed to empirically propose a framework for benefit-sharing negotiations in research by taking HIV vaccine trials as a case.
METHODS
The study was conducted in Tanzania using a case study design and qualitative approaches. Data were collected using in-depth interviews (IDI) and focus group discussions (FGD). A total of 37 study participants were selected purposively comprising institutional review board (IRB) members, researchers, community advisory board (CAB) members, a policymaker, and HIV/AIDS advocates. Deductive and inductive thematic analysis approaches were deployed to analyze collected data with the aid of MAXQDA version 20.4.0 software.
RESULTS
The findings indicate a triangular relationship between the research community, researched community and intermediaries. However, the relationship ought to take into consideration the timing of negotiations, the level of understanding between parties and the phase of the clinical trial. The proposed framework operationalize partnership interactions in community-based participatory research.
CONCLUSION
In the context of this study, the suggested framework incorporates the research community, the community being researched, and intermediary parties. The framework would guarantee well-informed and inclusive decision-making regarding benefit-sharing in HIV vaccine trials and other health-related research conducted in resource-limited settings.
Topics: Humans; AIDS Vaccines; Negotiating; HIV Infections; Tanzania; Community-Based Participatory Research; Qualitative Research; Clinical Trials as Topic; Focus Groups; Male; Female; Decision Making; Research Personnel; Stakeholder Participation; Developing Countries; Adult
PubMed: 38745276
DOI: 10.1186/s12910-024-01058-4 -
BMC Pregnancy and Childbirth May 2024Non-invasive prenatal testing (NIPT) has been clinically available in Australia on a user-pays basis since 2012. There are numerous providers, with available tests...
BACKGROUND
Non-invasive prenatal testing (NIPT) has been clinically available in Australia on a user-pays basis since 2012. There are numerous providers, with available tests ranging from targeted NIPT (only trisomies 21, 18, and 13 +/- sex chromosome aneuploidy) to genome-wide NIPT. While NIPT is being implemented in the public health care systems of other countries, in Australia, the implementation of NIPT has proceeded without public funding. The aim of this study was to investigate how NIPT has been integrated into antenatal care across Australia and reveal the successes and challenges in its implementation in this context.
METHODS
An anonymous online survey was conducted from September to October 2022. Invitations to participate were sent to healthcare professionals (HCPs) involved in the provision of NIPT in Australia through professional society mailing lists and networks. Participants were asked questions on their knowledge of NIPT, delivery of NIPT, and post-test management of results.
RESULTS
A total of 475 HCPs responded, comprising 232 (48.8%) obstetricians, 167 (35.2%) general practitioners, 32 (6.7%) midwives, and 44 (9.3%) genetic specialists. NIPT was most commonly offered as a first-tier test, with most HCPs (n = 279; 60.3%) offering it to patients as a choice between NIPT and combined first-trimester screening. Fifty-three percent (n = 245) of respondents always offered patients a choice between NIPT for the common autosomal trisomies and expanded (including genome-wide) NIPT. This choice was understood as supporting patient autonomy and informed consent. Cost was seen as a major barrier to access to NIPT, for both targeted and expanded tests. Equitable access, increasing time demands on HCPs, and staying up to date with advances were frequently reported as major challenges in delivering NIPT.
CONCLUSIONS
Our findings demonstrate substantial variation in the clinical implementation of NIPT in Australia, including in the offers of expanded screening options. After a decade of clinical use, Australian clinicians still report ongoing challenges in the clinical and equitable provision of NIPT.
Topics: Humans; Female; Australia; Pregnancy; Noninvasive Prenatal Testing; Surveys and Questionnaires; Health Personnel; Prenatal Care; Adult; Healthcare Disparities; Male
PubMed: 38745131
DOI: 10.1186/s12884-024-06565-1 -
JAMA Network Open May 2024Polygenic embryo screening (PES) is a novel technology that estimates the likelihood of developing future conditions (eg, diabetes or depression) and traits (eg, height...
IMPORTANCE
Polygenic embryo screening (PES) is a novel technology that estimates the likelihood of developing future conditions (eg, diabetes or depression) and traits (eg, height or cognitive ability) in human embryos, with the goal of selecting which embryos to use. Given its commercial availability and concerns raised by researchers, clinicians, bioethicists, and professional organizations, it is essential to inform key stakeholders and relevant policymakers about the public's perspectives on this technology.
OBJECTIVE
To survey US adults to examine general attitudes, interests, and concerns regarding PES use.
DESIGN, SETTING, AND PARTICIPANTS
For this survey study, data were collected from 1 stratified sample and 1 nonprobability sample (samples 1 and 2, respectively) between March and July 2023. The surveys measured approval, interest, and concerns regarding various applications of PES. In the second sample, presentation of a list of potential concerns was randomized (presented at survey onset vs survey end). The survey was designed using Qualtrics and distributed to participants through Prolific, an online sampling firm. Sample 1 was nationally representative with respect to gender, age, and race and ethnicity; sample 2 was recruited without specific demographic criteria. Analyses were conducted between March 2023 and February 2024.
MAIN OUTCOMES AND MEASURES
Participants reported their approval, interest, and concerns regarding various applications of PES and outcomes screened (eg, traits and conditions). Statistical analysis was conducted using independent samples t tests and repeated-measures analyses of variance.
RESULTS
Of the 1435 respondents in sample 1, demographic data were available for 1427 (mean [SD] age, 45.8 [16.0] years; 724 women [50.7%]). Among these 1427 sample 1 respondents, 1027 (72.0%) expressed approval for PES and 1169 (81.9%) expressed some interest in using PES if already undergoing in vitro fertilization (IVF). Approval among these respondents for using PES for embryo selection was notably high for physical health conditions (1109 [77.7%]) and psychiatric health conditions (1028 [72.0%]). In contrast, there was minority approval for embryo selection based on PES for behavioral traits (514 [36.0%]) and physical traits (432 [30.3%]). Nevertheless, concerns about PES leading to false expectations and promoting eugenic practices were pronounced, with 787 of 1422 (55.3%) and 780 of 1423 (54.8%) respondents finding them very to extremely concerning, respectively. Sample 2 included 192 respondents (mean [SD] age 37.7 [12.2] years; 110 men [57.3%]). These respondents were presented concerns at survey onset (n = 95) vs survey end (n = 97), which was associated with less approval (28-percentage point decrease) and more uncertainty (24 percentage-point increase) but with only slightly higher disapproval (4 percentage-point increase).
CONCLUSIONS AND RELEVANCE
These findings suggest that it is critical for health care professionals and medical societies to consider and understand the perspectives of diverse stakeholders (eg, patients undergoing IVF, clinicians, and the general public), given the absence of regulation and the recent commercial availability of PES.
Topics: Humans; Female; Adult; Male; Public Opinion; Middle Aged; Surveys and Questionnaires; United States; Multifactorial Inheritance; Genetic Testing
PubMed: 38743425
DOI: 10.1001/jamanetworkopen.2024.10832