BMC Medical Ethics最新文献

This paper examines the ethical considerations of using the incognito clinic visits by standardized patients (SP) in order to measure enacted stigma in healthcare settings. It reviews traditional SP methods, introduces the new method, and discusses its potential harms and benefits.

Background: Human fetal tissue (HFT) has played a pivotal role in many areas of biomedical research. Since its inception, HFT research has been a topic of ethical debate and specific regulation due to its link to abortion. To date, the ethical debate surrounding HFT donation for research has proceeded with limited empirical data to guide policy decisions. Current regulations are designed to minimize the possibility that HFT donation could impact the decision of whether to have an abortion by requiring that clinical consent for abortion be obtained prior to discussing research opportunities. Despite these timing restrictions, questions continue to be raised about the validity of informed consent for HFT research. We sought to collect empirical data to inform the policy debates by directly querying the experience of pregnant women asked to donate HFT for research.

Methods: We conducted qualitative interviews with 51 women who chose (n = 40), or declined (n = 11), to donate HFT. Recruitment challenges and high attrition impacted the number of participants we were able to interview who had declined to donate.

Results: Results revealed that none of the interviewees felt pressured to donate, and no one objected to being asked to participate. The majority of those who chose to donate HFT felt invested in the research and motivated to learn results. Participant feedback about the consent process, however, converged on a desire to learn about the option of HFT donation earlier in the appointment to allow for more time to consider research participation. Limitations include that the study took place in a single US state and results may differ in other jurisdictions.

Conclusions: We conclude with recommendations for policy amendments that could improve the experience of potential participants asked to donate HFT for biomedical research.

Background: The East African Community (EAC) has experienced a significant increase in volume and complexity of clinical research driven by the epidemics of emerging and re-emerging infectious diseases such as HIV, Ebola, COVID-19, and mpox. This demands for robust research, scientific, and ethical oversight. We aimed to strengthen the capacity of national research regulatory authorities (NRRA), research ethics committees (RECs), and researchers for review and oversight of studies with complex and emerging designs.

Methods: We implemented a blended training program from February 2024 to February 2025 in six EAC partner states, including; republic of Burundi, republic of Kenya, republic of Rwanda, republic of South Sudan, republic of Tanzania, and republic of Uganda. Trainees were evaluated using pre and post-training assessments, and also provided qualitative responses.

Results: A total of 186 participants completed the training, of which 59.0% (110/186) were males. Participants demonstrated a marked improvement in knowledge, with mean scores increasing from 52.9% at pre-test to 84.0% at post-test, and the proportion of participants that passed increased from 18.1% (34/186) at pre-test to 84.2% (157/186) at post-test. Three main themes emerged from the open-ended response evaluations: (1) enhanced understanding of emerging and complex study designs, (2) relevance to professional roles and practice, and (3) demand for advanced methodological training.

Conclusions: There was a substantial shift in knowledge on emerging and complex research study designs. We recommend regular training of NRRA and REC members to improve the quality of review of research protocols with complex and emerging study designs.

Background: End-of-life decisions in critically ill patients lacking decisional capacity are ethically challenging. Addressing patient values-such as autonomy, dignity, and comfort-provides a person-centered basis for care, yet systematic value assessment remains inconsistent. Structured family conferences guided by a bioethical framework may help align treatment with patient preferences. This study describes how often life-sustaining treatment (LST) modifications in a Brazilian ICU were aligned with documented patient values.

Methods: This retrospective observational case series reviewed electronic medical records of neurologically incapacitated adults admitted to a tertiary public ICU in São Paulo, Brazil (February 2022-August 2023). Eligible patients met predefined palliative care triggers. Data were extracted using standardized forms, focusing on demographics, clinical features, family conferences, decisions, and outcomes. Family conferences followed a structured bioethical framework and a communication model based on neurobiology to elicit patient values, which were categorized into predefined domains. Descriptive analyses were performed. The study followed STROBE guidelines, was ethics-approved with consent waiver, and did not influence clinical care.

Results: Of 179 consecutive intensive care unit admissions screened, 40 patients met eligibility criteria. Most were male (65%) with a mean age of 63.5 years. Palliative care triggers included advanced age with severe comorbidities or multi-organ failure (32.5%) and cerebral ischemia (32.5%). Family conferences occurred in 57.5% of patients, typically within three days, involving sons or spouses. Patient values were documented in 50% of the cases. Of the total sample (n = 40), the most frequently reported values were autonomy (37.5%) and avoidance of suffering (12.5%). Overall, 55% had LST modified-withholding (50%), withdrawal (7.5%)-and 42.5% of modifications were documented value-based, representing 73.9% of patients with family conferences. Outcomes included death with LST (25%), natural death after withholding/withdrawal (25%), discharge home (25%), hospice (20%), and ward transfer (5%).

Conclusions: Structured family conferences supported by a bioethical and communication frameworks were associated with a high frequency of treatment decisions explicitly aligned with patient values. These findings demonstrate that systematic value-based decision-making is feasible in resource-limited public hospitals. Prospective multicenter studies are needed to confirm these results and evaluate their impact on quality of care and clinical outcomes.