BMC Medical Ethics最新文献

Background: In 2021, a survey was conducted among doctors and nurses at Landspítali Iceland University Hospital (LIUH) regarding their views on medical assistance in dying (MAID) and the underlying arguments, the inclusion criteria and modality of implementation. Surveys on identically defined study groups in 1995 and 2010 were used for comparison.

Methods: The survey was sent to 357 doctors and 516 nurses working at LIUH. It included seven questions and several subquestions. Participants' answers were compared by profession, age group, and specialisation status. Descriptive and inferential statistics were used.

Results: A total of 135 doctors (38% response rate) and 103 nurses (20% response rate) answered the survey, representing 27% of the study group. A total of 145 (61%) participants were positive about MAID, with the most common argument being patient autonomy. The 95% margin of error for this view was ± 6.2%. Compared to 19% in 2010, support for MAID had tripled in 2021 (p < 0.05). Approximately 18% of participants did not support MAID of any kind, mostly due to arguments regarding preserving life or inconsistencies with the role of health care professionals. Finally, 19% of participants were uncertain of their views towards MAID, mostly due to the high level of complexity of the matter.

Conclusion: Compared to previous surveys, a large increase in positive attitudes towards MAID was observed among this study population. The results revealed the reasons for participants' attitudes; weighing patients' dignity/autonomy against professionals' duty to "not to kill"/palliate and showing some differences between professions.

Introduction: Given the growing number of Alzheimer's Disease and Alzheimer's Disease Related Dementias (AD/ADRD) genomics research projects and the vulnerabilities of study participants, it is critical to evaluate the literature on the ethical challenges in such studies to ensure high ethical standards.

Methods: We conducted a systematic review of the literature on ethical issues in AD/ADRD genomics research. We searched Embase, PsycINFO, CiNAHL, Scopus, and Ovid Medline for empirical and normative papers published in peer-reviewed journals on the ethical issues involved in conducting genomics research among persons with AD/ADRD. We used ethical principles from an existing framework as a priori codes to categorize the ethical issues and adapted another framework of Dementia Research Ethical Issues (DREI) as subcategories for our synthesis. We used the 2021 PRISMA guidelines to guide our study.

Results: We screened 5,509 papers and included 27 of these papers in the systematic review after deduplication, title, and full-text review. The papers contained 109 ethical issues that were mapped against 42 out of 75 relevant DREIs. The highest number of DREIs were mapped to "respect for persons and communities", "favorable risk-benefit ratio", "informed consent" and "scientific validity". The least mapped principles to the DREIs were "fair participant selection", "independent review", "social value", and "collaborative partnership".

Conclusion: Our review showed that there is a dearth of literature on the ethical principles of "fair participant selection", "independent review", "social value" and "collaborative partnership" in genomics research on AD/ADRDs. It is difficult to draw firm conclusions from the distribution of attention paid to specific principles because these may only reflect the concerns of AD/ADRD genomics research ethicists in high-income countries. There is need for more research on the ethics of AD/ADRD genomics research in low and middle-income countries for a more balanced account of the important ethical considerations in this field.

Background: Recently, the concept of expanded terminal sedation emerged to describe using sedation at the end of life in cases beyond the usual use. Using this sedation could be a stressful ethical encounter for healthcare providers.

Case: In this paper, we describe a case of a Muslim palliative care nurse who cared for a patient with cancer who requested expanded terminal sedation. The palliative care nurse described that his initial response to the expanded terminal sedation order was refusing to start the sedation because he believed the patient was not terminally ill and was concerned about killing him, which is prohibited according to his religious beliefs. Further, the nurse perceived the patient's psychological distress and his verbalization of wishing to die peacefully as a concealed request for euthanasia, especially since he was not imminently dying. Finally, the nurse reported being frustrated and uncertain about the care, especially since he did not receive appropriate psychological counseling from professional personnel.

Conclusions: any case beyond the usual conditions for terminal sedation should be carefully examined, especially when nurses' religious beliefs or moral values contradict it. If sedation should be administered, adequate preparation of healthcare providers should be arranged, including discussing with them the goals of care and the rationale for sedation before and after initiating it. Generating a policy for conscientious objections, allowing nurses to express their own emotions and concerns in a supportive environment are suggested approaches to preserve their wellness.

Background: Research in children is essential for them to benefit from the outcomes of research but involvement must be weighed against potential harms. In many countries and circumstances, medical research legally requires parental consent until the age of 18 years, with poorly defined recommendations for assent prior to this. However, there is little research exploring how these decisions are made by families and the ethical implications of this.

Aim: To explore key ethical debates in decision-making for participation of children and adolescents in a human papillomavirus (HPV) vaccine trial.

Methods: Semi-structured interviews were undertaken with Tanzanian girls (aged 9-16 years) who had participated in an HPV vaccine trial (n = 13), their parents or guardians (n = 12), and girls together with their parents (in paired parent-child interviews) (n = 6). The interviews were analysed using thematic analysis. Interview data came from a qualitative acceptability study undertaken as part of the Dose Reduction Immunobridging and Safety Study of Two Human Papillomavirus (HPV) Vaccines in Tanzanian Girls (DoRIS) trial.

Results: Girls and parents desired collaborative decision-making, with parents ultimately making the decision to consent. However, girls wanted a larger part in decision-making. Decisions to consent involved many people, including extended social networks, the trial team, media outlets and healthcare professionals and this resulted in conflicts to be negotiated. Deciding where to place trust was central in participants and parents considering decisions to consent and overcoming rumours about trial involvement.

Conclusions: Existing models of decision-making help to understand dynamics between parents, adolescents and researchers but neglect the important wider social impacts and the fundamental nature of trust. Children's roles in discussions can be evaluated using the principles of consent: autonomy, freedom and information. Concepts such as relational autonomy help to explain mechanisms families use to negotiate complex consent decisions. Whilst interviewees supported the maintenance of legal parental consent, researchers must design consent processes centring the child to ensure that whole family decision-making processes are supported.

Background: To identify and to summarize challenges related to the informed consent process for research completed during humanitarian emergencies.

Methods: Using relevant search terms, a search of 5 databases was completed, without language, date, or study type restriction. Studies were screened for inclusion, with eligible studies being those that were relevant to the informed consent process for research studies completed in humanitarian emergencies. A Grounded Theory Analysis was completed to identify themes and subthemes.

Results: Review identified 30 relevant studies. We identified 11 challenges (lack of trust, therapeutic misconception, reduced capacity, security and privacy concerns, harmful research, power differential, literacy, language/local and cultural context, researcher burden and re-evaluation of ongoing trials) and 7 strategies (engage local research communities, use alternative to standard written consent process, modify traditional process of research ethics board review, dynamic consent, training of research staff, mandating transparency of commercial interests, and mandating reporting of informed consent process in all publications) to confront the challenges. These challenges and strategies were unique to the informed consent process in research conducted during humanitarian emergencies.

Conclusions: This scoping review identified an evidence-based guide for researchers and research ethics boards to perform ethical informed consent procedures in humanitarian emergencies.

Trial registration: This trial was not registered as scoping reviews can not be registered as per updated PROSPERO guidelines.

Introduction: The COVID-19 pandemic generated overflow of healthcare systems in several countries. As the ethical debates focused on prioritisation for access to care with scarce medical resources, numerous recommendations were created. Late 2021, the emergence of the Omicron variant whose transmissibility was identified but whose vaccine sensitivity was still unknown, reactivated debates. Fears of the need to prioritise patients arose, particularly in France. Especially, a debate began about the role of vaccination status in the prioritisation strategy.

Material and methods: The Ethics Committee (EC) of the University Hospital of Bordeaux (UHB), France, identified prioritisation criteria in the literature (some recommended, such as being a healthcare worker (HCW) or having consented to research, while others were discouraged, such as age with a threshold effect or vaccination status). A survey was sent within the institution in January 2022 to explore frontline physicians' adherence to these prioritisation criteria. The decision making conditions were also surveyed.

Results: In 15 days, 78/165 (47.3%) frontline physicians responded, and more widely 1286/12946 (9.9%) professionals. A majority of frontline physicians were opposed to prioritising HCWs (54/75, 72%) and even more opposed to participating in research (69/76, 89.6%). Conversely, the results were very balanced for non-recommended criteria (respectively 39/77, 50.7% and 34/69 49.3% in favour for age with a threshold effect and for vaccination status). Decisions were considered to be multi-professional and multi-disciplinary for 65/76, 85.5% and 53/77, 68.8% of frontline physicians. Responders expressed opposition to extending decision-making to representatives of patients, civil society or HCWs not involved in care.

Discussion: Prioritisation recommendations in case of scarce medical resources were not necessarily approved by the frontline physicians, or by the other HCWs. This questions the way ethical recommendations should be communicated and discussed at a local scale, but it also questions these recommendations themselves. The article also reports the experience of seeking HCWs opinions on a sensitive ethical debate in a period of crisis.

Background: The impetus for policies promoting medical data sharing in China has gained significant traction. Nonetheless, the present legal and ethical framework governing the research use of medical data in China, is characterized by a more restrictive rather than permissive approach. The proportion of Chinese medical data being leveraged for scientific research still has room for improvement at present, indicating a significant untapped potential for advancing medical knowledge and improving healthcare outcomes. Building upon this research, we aim to delve deeper into the challenges researchers encounter in the sharing of medical data through focus group interviews.

Methods: We conducted two focus group interviews study with researchers representing diverse disciplines to explore their perspectives on 21 June 2021 and 28 July 2021. A total of seventeen researchers willingly participated in this study, representing various professional backgrounds. Similar codes were merged. Research team discussions were also utilized to select interviewees' statements that were regarded as typical or representative.

Results: The respondents demonstrated a strong understanding that medical data should not be disseminated arbitrarily, recognizing the importance of sharing data in compliance with laws. Through the interview, we found that although respondents stressed the importance of careful consideration regarding if and when this information can be responsibly released, none of the respondents raised the issue of necessitating consent from data subjects for the research use of medical data. This observation sharply contrasts with the stringent separate consent provisions for secondary data use outlined in the PIPL.

Conclusions: The findings from the focus group studies shed light on researchers' barriers and ethical challenges towards medical data sharing for scientific research, highlighting their deep concern for data security and cautious approach to sharing. The key objectives aimed at facilitating and enabling the reuse of medical data encompass enhancing interoperability, harmonizing data standards, improving data quality, safeguarding privacy, ensuring informed consent, incentivizing patients, and establishing explicit regulations pertaining to data access and utilization.

Background: The COVID-19 pandemic posed many unprecedented challenges to health care systems and public health efforts worldwide. Policy making and science were deeply intertwined, in particular with regard to the justification of health policy measures. In this context, ethical considerations were often at the core of decision-making trade-offs. However, not much is known about the actual ethical challenges encountered by policy makers and scientists involved in policy advice. With this study, we therefore aim to explore the ethical challenges during COVID-19-related political decision-making in Switzerland as perceived by policy makers and scientists involved in policy making. We also explore the role ethics advice had during the pandemic response and what can be learned for future public health crises.

Methods: We conducted thirteen qualitative expert interviews with policy makers and scientists involved in decision-making on COVID-19 policy responses in Switzerland on the regional and national level. We used inductive content analysis to analyse the interviews.

Results: Among the multitude of ethical challenges highlighted, interviewees perceived making trade-offs between the common good vs. the individual good and between economic welfare vs. health of the population, as well as proportionality of the policy measures, and the capacity of the public to accept uncertainty as central. Interviewees had diverging opinions on whether ethical considerations were sufficiently raised and discussed on the Swiss policy level during the COVID-19 pandemic. Among the reasons why ethics was not sufficiently discussed, they mentioned a lack of time in the fast-paced dynamic of the pandemic, ethics as a complex subject area, the interconnectedness between ethics and law, too much focus on few topics (mostly on vaccination-related ethical questions), and power relationships, such as dominance of medical professionals over ethicists. They evaluated ethics support to have been adequately present in the decision-making process, but wished for ethics training, involvement of the public in the discourse and for accompanying communication to build trust among the population for the future.

Conclusions: The study provides empirical insights into the ethical considerations of COVID-19 policy making in practice in Switzerland. It can help to develop ethics assistance for future crises and inform ethical health policy and decision-making not only in Switzerland, but also in other countries.

Background: Ethical decision making is a complex issue because it strongly depends on the religion, beliefs, traditional laws and moral views of each society. The purpose of this study was to explore the experience of Iranian family caregivers of end stage cancer patients about ethical decision making.

Methods: This qualitative study is based on van Manen's method of hermeneutic phenomenology. In-depth interviews were carried out to collect data. Participants were 12 caregiver. Audiotapes were transcribed and analyzed for common themes that represented the participants' experiences. Trustworthiness of the findings was established using the Lincoln and Guba's criteria.

Results: Three themes reflected the essence of caregivers' lived experience including; fluctuating between hope and despair, wandering dilemma, and ethical decision making. Each of these themes consisted of several subthemes.

Conclusion: The present study revealed that, the caregivers of terminally ill cancer patients need different information about prognosis and end of life decision making process. Our perception of how families negotiate ethical issues in their decision-making is still developing. Opportunities should be created to empowering caregivers to talk about their uncertainties and concerns.

Background: Informed consent is considered to be the standard method for respecting the autonomy of individual participants in research and practices and is thought to be based on several conditions: (1) providing information on the purpose of the research or a specific treatment, what it will entail, (2) the participants being mentally competent to understand the information and weigh it in the balance, and (3) the participants to be free from coercion. While there are studies of informed consent in other countries, especially Low and Middle Income Countries (LMICs), this study explored the experiences of clinicians regarding the process of obtaining informed consent to participate in a Randomised Controlled Trial (RCT) in particular and treatment in general in healthcare settings, both general and mental health, specifically focusing on the tension between individualistic concept of autonomy and collectivist values in cultures such as Pakistan.

Methods: Qualitative interviews with 20 clinicians from healthcare settings in Pakistan who also served as recruiters in a suicide prevention RCT in Pakistan. The interviews were guided by semi-structured topic guide. All interviews were audio-recorded and transcribed verbatim.

Results: The interviews revealed that shared decision making was more morally important than individual autonomy, the role of the family played a dominant part in the consent-taking procedure, the decision of the elder and/or family patriarch took prominence, and that clinician-researchers encountered significant challenges in consent process in Pakistan, while recruiting patients into the trial as well as during routine treatment processes in healthcare settings. Four distinct themes emerged which were (1) Family deciding for patients, (2) Benefits of involving family in consent process, (3) Gender disparity in consent process, (4) Challenges experienced by clinician-researchers during consent process in Pakistan.

Conclusions: The concept of consent is generally considered important in many cultures, however, there are two strands of understanding. There seems to be consensus that participant agreement is necessary to protect the participant but with regards to autonomy there are significant cultural differences whether it is the right for autonomy of the individual (individualistic concept) or family, community, or expert authority in other cultures. In Pakistan clinician-researchers sometimes preferred one approach and sometimes the other as they appreciated the interests of the patient to be.