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Research ethics and artificial intelligence for global health: perspectives from the global forum on bioethics in research 研究伦理与人工智能促进全球健康:全球研究生物伦理论坛的观点
IF 2.7 1区 哲学 Q1 ETHICS Pub Date : 2024-04-18 DOI: 10.1186/s12910-024-01044-w
James Shaw, Joseph Ali, Caesar A. Atuire, Phaik Yeong Cheah, Armando Guio Español, Judy Wawira Gichoya, Adrienne Hunt, Daudi Jjingo, Katherine Littler, Daniela Paolotti, Effy Vayena
The ethical governance of Artificial Intelligence (AI) in health care and public health continues to be an urgent issue for attention in policy, research, and practice. In this paper we report on central themes related to challenges and strategies for promoting ethics in research involving AI in global health, arising from the Global Forum on Bioethics in Research (GFBR), held in Cape Town, South Africa in November 2022. The GFBR is an annual meeting organized by the World Health Organization and supported by the Wellcome Trust, the US National Institutes of Health, the UK Medical Research Council (MRC) and the South African MRC. The forum aims to bring together ethicists, researchers, policymakers, research ethics committee members and other actors to engage with challenges and opportunities specifically related to research ethics. In 2022 the focus of the GFBR was “Ethics of AI in Global Health Research”. The forum consisted of 6 case study presentations, 16 governance presentations, and a series of small group and large group discussions. A total of 87 participants attended the forum from 31 countries around the world, representing disciplines of bioethics, AI, health policy, health professional practice, research funding, and bioinformatics. In this paper, we highlight central insights arising from GFBR 2022. We describe the significance of four thematic insights arising from the forum: (1) Appropriateness of building AI, (2) Transferability of AI systems, (3) Accountability for AI decision-making and outcomes, and (4) Individual consent. We then describe eight recommendations for governance leaders to enhance the ethical governance of AI in global health research, addressing issues such as AI impact assessments, environmental values, and fair partnerships. The 2022 Global Forum on Bioethics in Research illustrated several innovations in ethical governance of AI for global health research, as well as several areas in need of urgent attention internationally. This summary is intended to inform international and domestic efforts to strengthen research ethics and support the evolution of governance leadership to meet the demands of AI in global health research.
人工智能(AI)在医疗保健和公共卫生领域的伦理管理仍然是政策、研究和实践中亟需关注的问题。在本文中,我们将报告 2022 年 11 月在南非开普敦举行的全球研究生物伦理论坛(GFBR)上提出的与促进全球卫生领域人工智能研究伦理的挑战和战略有关的核心主题。全球研究领域生物伦理论坛是由世界卫生组织主办的年度会议,并得到了惠康基金会、美国国立卫生研究院、英国医学研究理事会(MRC)和南非医学研究理事会的支持。论坛旨在汇聚伦理学家、研究人员、决策者、研究伦理委员会成员和其他参与者,共同应对与研究伦理具体相关的挑战和机遇。2022 年,GFBR 论坛的重点是 "全球健康研究中的人工智能伦理"。论坛包括 6 个案例研究报告、16 个治理报告以及一系列小组和大组讨论。共有来自全球 31 个国家的 87 名与会者参加了论坛,他们分别代表了生物伦理学、人工智能、卫生政策、卫生专业实践、研究经费和生物信息学等学科。在本文中,我们将重点介绍 2022 年全球生物伦理学论坛的核心观点。我们阐述了论坛提出的四个主题观点的重要意义:(1) 建立人工智能的适当性,(2) 人工智能系统的可移植性,(3) 人工智能决策和结果的责任,以及 (4) 个人同意。然后,我们介绍了针对治理领导者的八项建议,以加强全球健康研究中的人工智能伦理治理,解决人工智能影响评估、环境价值和公平伙伴关系等问题。2022 年全球研究生物伦理论坛展示了全球健康研究人工智能伦理治理方面的几项创新,以及国际上亟需关注的几个领域。本摘要旨在为国际和国内加强研究伦理的努力提供信息,并支持治理领导力的发展,以满足全球健康研究对人工智能的需求。
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引用次数: 0
A logic framework for addressing medical racism in academic medicine: an analysis of qualitative data 解决学术医学中的医学种族主义问题的逻辑框架:定性数据分析
IF 2.7 1区 哲学 Q1 ETHICS Pub Date : 2024-04-15 DOI: 10.1186/s12910-024-01045-9
Pamela Roach, Shannon M. Ruzycki, Kirstie C. Lithgow, Chanda R. McFadden, Adrian Chikwanha, Jayna Holroyd-Leduc, Cheryl Barnabe
Despite decades of anti-racism and equity, diversity, and inclusion (EDI) interventions in academic medicine, medical racism continues to harm patients and healthcare providers. We sought to deeply explore experiences and beliefs about medical racism among academic clinicians to understand the drivers of persistent medical racism and to inform intervention design. We interviewed academically-affiliated clinicians with any racial identity from the Departments of Family Medicine, Cardiac Sciences, Emergency Medicine, and Medicine to understand their experiences and perceptions of medical racism. We performed thematic content analysis of semi-structured interview data to understand the barriers and facilitators of ongoing medical racism. Based on participant narratives, we developed a logic framework that demonstrates the necessary steps in the process of addressing racism using if/then logic. This framework was then applied to all narratives and the barriers to addressing medical racism were aligned with each step in the logic framework. Proposed interventions, as suggested by participants or study team members and/or identified in the literature, were matched to these identified barriers to addressing racism. Participant narratives of their experiences of medical racism demonstrated multiple barriers to addressing racism, such as a perceived lack of empathy from white colleagues. Few potential facilitators to addressing racism were also identified, including shared language to understand racism. The logic framework suggested that addressing racism requires individuals to understand, recognize, name, and confront medical racism. Organizations can use this logic framework to understand their local context and select targeted anti-racism or EDI interventions. Theory-informed approaches to medical racism may be more effective than interventions that do not address local barriers or facilitators for persistent medical racism.
尽管数十年来学术医学界采取了反种族主义和公平、多样性与包容性(EDI)干预措施,但医疗种族主义仍在伤害患者和医疗服务提供者。我们试图深入探讨学术界临床医生对医疗种族主义的经历和看法,以了解持续存在的医疗种族主义的驱动因素,并为干预措施的设计提供依据。我们采访了来自家庭医学系、心脏科学系、急诊医学系和医学系的任何种族身份的学术界临床医生,以了解他们对医疗种族主义的经历和看法。我们对半结构式访谈数据进行了主题内容分析,以了解持续存在的医学种族主义的障碍和促进因素。根据参与者的叙述,我们制定了一个逻辑框架,利用 "如果/那么 "逻辑展示了解决种族主义问题过程中的必要步骤。然后将该框架应用于所有叙述,并将解决医疗种族主义问题的障碍与逻辑框架中的每个步骤相一致。参与者或研究小组成员建议的干预措施和/或文献中确定的干预措施与这些已确定的解决种族主义问题的障碍相匹配。参与者对其医疗种族主义经历的叙述显示了解决种族主义问题的多重障碍,如认为白人同事缺乏同情心。同时也发现了一些解决种族主义问题的潜在促进因素,包括理解种族主义的共同语言。逻辑框架表明,解决种族主义问题需要个人理解、认识、命名和面对医疗种族主义。各组织可利用这一逻辑框架了解当地情况,选择有针对性的反种族主义或电子数据交换干预措施。有理论依据的解决医疗种族主义的方法可能比不解决当地持续存在的医疗种族主义的障碍或促进因素的干预措施更有效。
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引用次数: 0
Oncologists’ perspective on advance directives, a French national prospective cross-sectional survey – the ADORE study 肿瘤学家对预先医疗指示的看法--法国全国前瞻性横断面调查--ADORE 研究
IF 2.7 1区 哲学 Q1 ETHICS Pub Date : 2024-04-10 DOI: 10.1186/s12910-024-01046-8
Amélie Cambriel, Kevin Serey, Adrien Pollina-Bachellerie, Mathilde Cancel, Morgan Michalet, Jacques-Olivier Bay, Carole Bouleuc, Jean-Pierre Lotz, Francois Philippart
The often poor prognosis associated with cancer necessitates empowering patients to express their care preferences. Yet, the prevalence of Advance Directives (AD) among oncology patients remains low. This study investigated oncologists' perspectives on the interests and challenges associated with implementing AD. A French national online survey targeting hospital-based oncologists explored five areas: AD information, writing support, AD usage, personal perceptions of AD's importance, and respondent's profile. The primary outcome was to assess how frequently oncologists provide patients with information about AD in daily clinical practice. Additionally, we examined factors related to delivering information on AD. Of the 410 oncologists (50%) who responded to the survey, 75% (n = 308) deemed AD relevant. While 36% (n = 149) regularly inform patients about AD, 25% (n = 102) remain skeptical about AD. Among the respondents who do not consistently discuss AD, the most common reason given is the belief that AD may induce anxiety (n = 211/353; 60%). Of all respondents, 90% (n = 367) believe patients require specific information to draft relevant AD. Physicians with experience in palliative care were more likely to discuss AD (43% vs 32.3%, p = 0.027). Previous experience in critical care was associated with higher levels of distrust towards AD (31.5% vs 18.8%, p = 0.003), and 68.5% (n = 281) of the respondents expressed that designating a “person of trust” would be more appropriate than utilizing AD. Despite the perceived relevance of AD, only a third of oncologists regularly apprise their patients about them. Significant uncertainty persists about the safety and relevance of AD.
癌症患者的预后往往不佳,因此有必要让患者表达自己的护理偏好。然而,预先医疗指示(AD)在肿瘤患者中的普及率仍然很低。本研究调查了肿瘤学家对实施预嘱的兴趣和挑战的看法。一项针对医院肿瘤科医生的法国全国性在线调查探讨了五个方面的问题:AD信息、写作支持、AD使用情况、个人对AD重要性的看法以及受访者的概况。主要结果是评估肿瘤学家在日常临床实践中向患者提供 AD 信息的频率。此外,我们还考察了与提供 AD 信息相关的因素。在回复调查的 410 名肿瘤学家(50%)中,75%(n = 308)认为 AD 具有相关性。36%(n = 149)的受访者会定期向患者介绍抗逆转录病毒,25%(n = 102)的受访者则对抗逆转录病毒持怀疑态度。在不经常讨论注意力缺失症的受访者中,最常见的原因是认为注意力缺失症可能会诱发焦虑(n = 211/353;60%)。在所有受访者中,90%(n = 367)的受访者认为患者需要具体信息才能起草相关的 AD 草案。具有姑息治疗经验的医生更有可能讨论 AD(43% vs 32.3%,p = 0.027)。曾有过重症监护经验的医生对AD的不信任度更高(31.5% vs 18.8%,p = 0.003),68.5%(n = 281)的受访者表示指定 "信任的人 "比使用AD更合适。尽管人们认为AD具有相关性,但只有三分之一的肿瘤学家会定期向患者介绍AD。对于辅助用药的安全性和相关性仍存在很大的不确定性。
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引用次数: 0
Physicians’ views on the role of relatives in euthanasia and physician-assisted suicide decision-making: a mixed-methods study among physicians in the Netherlands 医生对亲属在安乐死和医生协助自杀决策中的作用的看法:一项针对荷兰医生的混合方法研究
IF 2.7 1区 哲学 Q1 ETHICS Pub Date : 2024-04-05 DOI: 10.1186/s12910-024-01031-1
Sophie C. Renckens, Bregje D. Onwuteaka-Philipsen, Agnes van der Heide, H. Roeline Pasman
Relatives have no formal position in the practice of euthanasia and physician-assisted suicide (EAS) according to Dutch legislation. However, research shows that physicians often involve relatives in EAS decision-making. It remains unclear why physicians do (not) want to involve relatives. Therefore, we examined how many physicians in the Netherlands involve relatives in EAS decision-making and explored reasons for (not) involving relatives and what involvement entails. In a mixed-methods study, 746 physicians (33% response rate) completed a questionnaire, and 20 were interviewed. The questionnaire included two statements on relatives’ involvement in EAS decision-making. Descriptive statistics were used, and multivariable logistic regression analyses to explore characteristics associated with involving relatives. In subsequent interviews, we explored physicians’ views on involving relatives in EAS decision-making. Interviews were thematically analysed. The majority of physicians want to know relatives’ opinions about an EAS request (80%); a smaller group also takes these opinions into account in EAS decision-making (35%). Physicians who had ever received an explicit EAS request were more likely to want to know opinions and clinical specialists and elderly care physicians were more likely to take these opinions into account. In interviews, physicians mentioned several reasons for involving relatives: e.g. to give relatives space and help them in their acceptance, to tailor support, to be able to perform EAS in harmony, and to mediate in case of conflicting views. Furthermore, physicians explained that relatives’ opinions can influence the decision-making process but cannot be a decisive factor. If relatives oppose the EAS request, physicians find the process more difficult and try to mediate between patients and relatives by investigating relatives’ objections and providing appropriate information. Reasons for not taking relatives’ opinions into account include not wanting to undermine patient autonomy and protecting relatives from a potential burdensome decision. Although physicians know that relatives have no formal role, involving relatives in EAS decision-making is common practice in the Netherlands. Physicians consider this important as relatives need to continue with their lives and may need bereavement support. Additionally, physicians want to perform EAS in harmony with everyone involved. However, relatives’ opinions are not decisive.
根据荷兰法律,亲属在安乐死和医生协助自杀(EAS)实践中没有正式地位。然而,研究表明,医生通常会让亲属参与 EAS 决策。目前仍不清楚医生为何愿意(不愿意)让亲属参与。因此,我们研究了荷兰有多少医生让亲属参与 EAS 决策,并探讨了让亲属参与(不参与)的原因以及参与的意义。在一项混合方法研究中,746 名医生(回复率为 33%)填写了调查问卷,20 名医生接受了访谈。调查问卷包括两份关于亲属参与 EAS 决策的声明。我们使用了描述性统计和多变量逻辑回归分析来探讨亲属参与的相关特征。在随后的访谈中,我们探讨了医生对亲属参与 EAS 决策的看法。我们对访谈内容进行了专题分析。大多数医生希望了解亲属对急救服务请求的意见(80%);一小部分医生在急救服务决策中也会考虑这些意见(35%)。曾经收到过明确的急救服务请求的医生更有可能希望了解亲属的意见,而临床专家和老年护理医生则更有可能考虑这些意见。在访谈中,医生提到了让亲属参与的几个原因:例如,给亲属空间并帮助他们接受,提供量身定制的支持,能够和谐地执行简易护理服务,以及在意见相左时进行调解。此外,医生还解释说,亲属的意见可以影响决策过程,但不能成为决定性因素。如果亲属反对 EAS 的要求,医生就会觉得这个过程更加困难,并试图通过调查亲属的反对意见和提供适当的信息在患者和亲属之间进行调解。不考虑亲属意见的原因包括不想损害病人的自主权,以及保护亲属免受潜在的决定负担。虽然医生知道亲属没有正式的角色,但在荷兰,让亲属参与 EAS 决策是常见的做法。医生认为这一点很重要,因为亲属需要继续生活,并可能需要丧亲支持。此外,医生还希望在实施 EAS 时与所有相关人员和谐相处。然而,亲属的意见并不是决定性的。
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引用次数: 0
Ethical use of artificial intelligence to prevent sudden cardiac death: an interview study of patient perspectives 利用人工智能预防心脏性猝死的伦理问题:对患者观点的访谈研究
IF 2.7 1区 哲学 Q1 ETHICS Pub Date : 2024-04-04 DOI: 10.1186/s12910-024-01042-y
Menno T. Maris, Ayca Koçar, Dick L. Willems, Jeannette Pols, Hanno L. Tan, Georg L. Lindinger, Marieke A.R. Bak
The emergence of artificial intelligence (AI) in medicine has prompted the development of numerous ethical guidelines, while the involvement of patients in the creation of these documents lags behind. As part of the European PROFID project we explore patient perspectives on the ethical implications of AI in care for patients at increased risk of sudden cardiac death (SCD). Explore perspectives of patients on the ethical use of AI, particularly in clinical decision-making regarding the implantation of an implantable cardioverter-defibrillator (ICD). Semi-structured, future scenario-based interviews were conducted among patients who had either an ICD and/or a heart condition with increased risk of SCD in Germany (n = 9) and the Netherlands (n = 15). We used the principles of the European Commission’s Ethics Guidelines for Trustworthy AI to structure the interviews. Six themes arose from the interviews: the ability of AI to rectify human doctors’ limitations; the objectivity of data; whether AI can serve as second opinion; AI explainability and patient trust; the importance of the ‘human touch’; and the personalization of care. Overall, our results reveal a strong desire among patients for more personalized and patient-centered care in the context of ICD implantation. Participants in our study express significant concerns about the further loss of the ‘human touch’ in healthcare when AI is introduced in clinical settings. They believe that this aspect of care is currently inadequately recognized in clinical practice. Participants attribute to doctors the responsibility of evaluating AI recommendations for clinical relevance and aligning them with patients’ individual contexts and values, in consultation with the patient. The ‘human touch’ patients exclusively ascribe to human medical practitioners extends beyond sympathy and kindness, and has clinical relevance in medical decision-making. Because this cannot be replaced by AI, we suggest that normative research into the ‘right to a human doctor’ is needed. Furthermore, policies on patient-centered AI integration in clinical practice should encompass the ethics of everyday practice rather than only principle-based ethics. We suggest that an empirical ethics approach grounded in ethnographic research is exceptionally well-suited to pave the way forward.
人工智能(AI)在医学领域的出现推动了众多伦理指南的制定,而患者在这些文件制定过程中的参与却相对滞后。作为欧洲 PROFID 项目的一部分,我们从患者的角度探讨了人工智能在心源性猝死(SCD)高危患者护理中的伦理意义。探索患者对人工智能伦理使用的看法,尤其是在植入式心律转复除颤器(ICD)的临床决策中。我们对德国(9 人)和荷兰(15 人)患有 ICD 和/或 SCD 风险增加的心脏疾病的患者进行了基于未来情景的半结构式访谈。我们采用了欧盟委员会《可信人工智能伦理指南》的原则来组织访谈。访谈中产生了六个主题:人工智能纠正人类医生局限性的能力;数据的客观性;人工智能是否可以作为第二意见;人工智能的可解释性和患者的信任;"人情味 "的重要性;以及护理的个性化。总体而言,我们的研究结果表明,在植入 ICD 的情况下,患者强烈希望获得更加个性化和以患者为中心的护理。我们研究的参与者对在临床环境中引入人工智能后医疗保健中 "人情味 "的进一步丧失表示了极大的担忧。他们认为,目前在临床实践中对这方面的护理认识不足。参与者认为,医生有责任与患者协商,评估人工智能建议的临床相关性,并使其符合患者的个人背景和价值观。患者对人类医生的 "人文关怀 "不仅限于同情和善意,还与医疗决策密切相关。由于人工智能无法取代这一点,我们建议需要对 "获得人类医生服务的权利 "进行规范性研究。此外,将以患者为中心的人工智能融入临床实践的政策应包含日常实践中的伦理,而不仅仅是基于原则的伦理。我们认为,以人种学研究为基础的实证伦理学方法非常适合为未来铺平道路。
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引用次数: 0
Measuring moral distress in health professionals using the MMD-HP-SPA scale 使用MMD-HP-SPA量表测量卫生专业人员的道德困扰
IF 2.7 1区 哲学 Q1 ETHICS Pub Date : 2024-04-03 DOI: 10.1186/s12910-024-01041-z
Eloy Girela-Lopez, Cristina M. Beltran-Aroca, Jaime Boceta-Osuna, Dolores Aguilera-Lopez, Alejandro Gomez-Carranza, Manuel Lopez-Valero, Manuel Romero-Saldaña
Moral distress (MD) is the psychological damage caused when people are forced to witness or carry out actions which go against their fundamental moral values. The main objective was to evaluate the prevalence and predictive factors associated with MD among health professionals during the pandemic and to determine its causes. A regional, observational and cross-sectional study in a sample of 566 professionals from the Public Health Service of Andalusia (68.7% female; 66.9% physicians) who completed the MMD-HP-SPA scale to determine the level of MD (0-432 points). Five dimensions were used: i) Health care; ii) Therapeutic obstinacy-futility, iii) Interpersonal relations of the Healthcare Team, iv) External pressure; v) Covering up of medical malpractice. The mean level of MD was 127.3 (SD=66.7; 95% CI 121.8-132.8), being higher in female (135 vs. 110.3; p<0.01), in nursing professionals (137.8 vs. 122; p<0.01) and in the community setting (136.2 vs. 118.3; p<0.001), with these variables showing statistical significance in the multiple linear regression model (p<0.001; r2=0.052). With similar results, the multiple logistic regression model showed being female was a higher risk factor (OR=2.27; 95% CI 1.5-3.4; p<0.001). 70% of the sources of MD belonged to the dimension "Health Care" and the cause "Having to attend to more patients than I can safely attend to" obtained the highest average value (Mean=9.8; SD=4.9). Female, nursing professionals, and those from the community setting presented a higher risk of MD. The healthcare model needs to implement an ethical approach to public health issues to alleviate MD among its professionals.
道德困扰(MD)是指当人们被迫目睹或实施违背其基本道德价值观的行为时所造成的心理伤害。研究的主要目的是评估大流行病期间卫生专业人员中道德困扰的发生率和相关预测因素,并确定其原因。这是一项区域性、观察性和横断面研究,抽样调查了安达卢西亚公共卫生服务机构的 566 名专业人员(68.7% 为女性;66.9% 为医生),他们填写了 MMD-HP-SPA 量表,以确定 MD 水平(0-432 分)。量表包括五个维度:i) 医疗保健;ii) 治疗顽固性-效用;iii) 医疗团队的人际关系;iv) 外部压力;v) 掩盖医疗事故。MD 的平均水平为 127.3 (SD=66.7; 95% CI 121.8-132.8),女性(135 vs. 110.3; p<0.01)、护理专业人员(137.8 vs. 122; p<0.01)和社区环境(136.2 vs. 118.3; p<0.001)较高,这些变量在多元线性回归模型中显示出统计学意义(p<0.001; r2=0.052)。多元逻辑回归模型显示,女性是一个较高的风险因素(OR=2.27;95% CI 1.5-3.4;p<0.001)。70%的 MD 来源属于 "医疗保健 "维度,而 "不得不照顾的病人超过了我能安全照顾的人数 "这一原因获得了最高的平均值(平均值=9.8;标准差=4.9)。女性、护理专业人员和来自社区的人员患 MD 的风险较高。医疗保健模式需要在公共卫生问题上实施道德方法,以减少专业人员中的 MD。
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引用次数: 0
Attitudes of the Portuguese population towards advance directives: an online survey 葡萄牙人对预先指示的态度:在线调查
IF 2.7 1区 哲学 Q1 ETHICS Pub Date : 2024-04-03 DOI: 10.1186/s12910-024-01043-x
João Carlos Macedo, Luísa Castro, Rui Nunes
Advance directives (ADs) were implemented in Portugal in 2012. Although more than a decade has passed since Law 25/2012 came into force, Portuguese people have very low levels of adherence. In this context, this study aimed to identify and analyse the attitudes of people aged 18 or older living in Portugal towards ADs and to determine the relationships between sociodemographic variables (gender/marital status/religion/level of education/residence/whether they were a health professional/whether they had already drawn up a living will) and people’s attitudes towards ADs. An online cross-sectional analytical study was conducted using a convenience sample. For this purpose, a request (email) that publicized the link to a –form—which included sociodemographic data and the General Public Attitudes Toward Advance Care Directives (GPATACD) scale—was sent to 28 higher education institutions and 30 senior universities, covering all of mainland Portugal and the islands (Azores and Madeira). The data were collected between January and February 2023. A total of 950 adults from completed the online form. The lower scores (mean 1 and 2) obtained in most responses by applying the GPATACD scale show that the sample of the Portuguese population has a very positive attitude towards ADs. The data showed that women, agnostics/atheists, health professionals and those who had already made a living will had more positive attitudes (p < 0.001) towards ADs. There were no statistically significant differences in the attitudes of the Portuguese population sample towards ADs in relation to marital status, education level, and residence. The results obtained enable us to confirm that this sample of the Portuguese population has a positive attitude towards ADs. We verify that there are certain fringes of this sample with certain sociodemographic characteristics (women, agnostics/atheists, health professionals and those who had already made a living will) that have a more positive attitude towards ADs. This data could facilitate the implementation and adjustment of relevant measures, particularly in the field of health education and aimed at groups with less favourable attitudes, to increase the effectiveness of voluntary exercise of citizens’ autonomy in end-of-life care planning.
葡萄牙于 2012 年开始实施预先医疗指示 (AD)。尽管自第 25/2012 号法律生效以来已过去了十多年,但葡萄牙人的遵从程度仍然很低。在此背景下,本研究旨在确定和分析葡萄牙 18 岁或以上居民对预嘱的态度,并确定社会人口变量(性别/婚姻状况/宗教信仰/教育水平/居住地/是否为医疗专业人士/是否已起草生前预嘱)与人们对预嘱的态度之间的关系。本研究采用方便抽样法进行了一项在线横截面分析研究。为此,我们向 28 所高等教育机构和 30 所高级大学发送了一份请求(电子邮件),公布了一份表格的链接,其中包括社会人口学数据和公众对预先医疗指示(GPATACD)的态度量表,覆盖了葡萄牙大陆所有地区和岛屿(亚速尔群岛和马德拉群岛)。数据收集时间为 2023 年 1 月至 2 月。共有 950 名成人填写了在线表格。通过使用 GPATACD 量表,大多数回答的得分较低(平均 1 分和 2 分),这表明葡萄牙人口样本对注意力缺失症持非常积极的态度。数据显示,女性、不可知论者/无神论者、卫生专业人员和已立遗嘱者对反兴奋剂的态度更为积极(p < 0.001)。在统计学上,葡萄牙人口样本对反兴奋剂的态度与婚姻状况、教育水平和居住地没有明显差异。所获得的结果使我们能够确认,葡萄牙人口样本对反兴奋剂持积极态度。我们证实,该样本中某些具有特定社会人口特征的边缘人群(女性、不可知论者/无神论者、保健专业人员和已立下生前遗嘱者)对反兴奋剂持更积极的态度。这些数据有助于实施和调整相关措施,尤其是在健康教育领域,并针对态度较差的群体,以提高公民在临终关怀规划中自愿行使自主权的有效性。
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引用次数: 0
Exploring health and disease concepts in healthcare practice: an empirical philosophy of medicine study. 探索医疗实践中的健康与疾病概念:医学哲学实证研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-03-27 DOI: 10.1186/s12910-024-01037-9
Rik R van der Linden, Maartje H N Schermer

In line with recent proposals for experimental philosophy and philosophy of science in practice, we propose that the philosophy of medicine could benefit from incorporating empirical research, just as bioethics has. In this paper, we therefore take first steps towards the development of an empirical philosophy of medicine, that includes investigating practical and moral dimensions. This qualitative study gives insight into the views and experiences of a group of various medical professionals and patient representatives regarding the conceptualization of health and disease concepts in practice and the possible problems that surround them. This includes clinical, epistemological, and ethical issues. We have conducted qualitative interviews with a broad range of participants (n = 17), working in various health-related disciplines, fields and organizations. From the interviews, we highlight several different practical functions of definitions of health and disease. Furthermore, we discuss 5 types of problematic situations that emerged from the interviews and analyze the underlying conceptual issues. By providing theoretical frameworks and conceptual tools, and by suggesting conceptual changes or adaptations, philosophers might be able to help solve some of these problems. This empirical-philosophical study contributes to a more pragmatic way of understanding the relevance of conceptualizing health and disease by connecting the participants' views and experiences to the theoretical debate. Going back and forth between theory and practice will likely result in a more complex but hopefully also better and more fruitful understanding of health and disease concepts.

与最近提出的实验哲学和实践科学哲学相一致,我们建议医学哲学也能像生命伦理学一样,从纳入实证研究中获益。因此,在本文中,我们迈出了发展实证医学哲学的第一步,其中包括对实践和道德层面的调查。这项定性研究深入探讨了一组不同的医学专业人员和患者代表对实践中的健康和疾病概念化及其可能存在的问题的看法和经验。其中包括临床、认识论和伦理问题。我们对广泛的参与者(n = 17)进行了定性访谈,他们来自不同的健康相关学科、领域和组织。通过访谈,我们强调了健康和疾病定义的几种不同的实际功能。此外,我们还讨论了访谈中出现的 5 种问题情况,并分析了潜在的概念问题。通过提供理论框架和概念工具,以及提出概念变革或调整建议,哲学家们或许能够帮助解决其中的一些问题。这项实证哲学研究通过将参与者的观点和经验与理论辩论联系起来,有助于以更加务实的方式理解健康和疾病概念化的相关性。在理论与实践之间来回穿梭,很可能会导致对健康与疾病概念的理解更加复杂,但希望也能更好、更富有成效。
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引用次数: 0
How patients experience respect in healthcare: findings from a qualitative study among multicultural women living with HIV. 患者如何体验医疗保健中的尊重:对感染艾滋病毒的多元文化女性的定性研究结果。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-03-27 DOI: 10.1186/s12910-024-01015-1
Sofia B Fernandez, Alya Ahmad, Mary Catherine Beach, Melissa K Ward, Michele Jean-Gilles, Gladys Ibañez, Robert Ladner, Mary Jo Trepka

Background: Respect is essential to providing high quality healthcare, particularly for groups that are historically marginalized and stigmatized. While ethical principles taught to health professionals focus on patient autonomy as the object of respect for persons, limited studies explore patients' views of respect. The purpose of this study was to explore the perspectives of a multiculturally diverse group of low-income women living with HIV (WLH) regarding their experience of respect from their medical physicians.

Methods: We analyzed 57 semi-structured interviews conducted at HIV case management sites in South Florida as part of a larger qualitative study that explored practices facilitating retention and adherence in care. Women were eligible to participate if they identified as African American (n = 28), Hispanic/Latina (n = 22), or Haitian (n = 7). They were asked to describe instances when they were treated with respect by their medical physicians. Interviews were conducted by a fluent research interviewer in either English, Spanish, or Haitian Creole, depending on participant's language preference. Transcripts were translated, back-translated and reviewed in entirety for any statements or comments about "respect." After independent coding by 3 investigators, we used a consensual thematic analysis approach to determine themes.

Results: Results from this study grouped into two overarching classifications: respect manifested in physicians' orientation towards the patient (i.e., interpersonal behaviors in interactions) and respect in medical professionalism (i.e., clinic procedures and practices). Four main themes emerged regarding respect in provider's orientation towards the patient: being treated as a person, treated as an equal, treated without blame or prejudice, and treated with concern/emotional support. Two main themes emerged regarding respect as evidenced in medical professionalism: physician availability and considerations of privacy.

Conclusions: Findings suggest a more robust conception of what 'respect for persons' entails in medical ethics for a diverse group of low-income women living with HIV. Findings have implications for broadening areas of focus of future bioethics education, training, and research to include components of interpersonal relationship development, communication, and clinic procedures. We suggest these areas of training may increase respectful medical care experiences and potentially serve to influence persistent and known social and structural determinants of health through provider interactions and health care delivery.

背景:尊重对于提供高质量的医疗保健服务至关重要,尤其是对于那些在历史上被边缘化和被污名化的群体。虽然向医疗专业人员传授的伦理原则侧重于将患者自主权作为尊重他人的对象,但探讨患者对尊重的看法的研究却十分有限。本研究的目的是探讨低收入女性艾滋病感染者(WLH)这一多元文化群体对医生尊重她们的体验的看法:我们分析了在南佛罗里达州 HIV 病例管理机构进行的 57 次半结构式访谈,这些访谈是一项大型定性研究的一部分,该研究探讨了促进保持和坚持护理的做法。符合条件的女性包括非裔美国人(28 人)、西班牙裔/拉丁美洲人(22 人)或海地人(7 人)。她们被要求描述自己受到医生尊重的情况。访谈由一名流利的研究访谈员以英语、西班牙语或海地克里奥尔语进行,具体语言取决于受试者的语言偏好。访谈记录经过翻译、反译和全文审阅,以查找任何有关 "尊重 "的陈述或评论。经过 3 位调查人员的独立编码后,我们采用了协商一致的主题分析方法来确定主题:本研究的结果分为两大类:尊重体现在医生对病人的态度上(即互动中的人际行为)和尊重体现在医疗专业精神上(即诊疗程序和实践)。在医疗服务提供者对病人的态度中,出现了四个关于尊重的主题:被当作一个人对待、被当作一个平等的人对待、不被指责或偏见对待、被关心/情感支持对待。在医疗专业精神中体现出的尊重方面,出现了两大主题:医生的可用性和对隐私的考虑:研究结果表明,对于不同的低收入女性艾滋病感染者群体而言,"尊重他人 "在医学伦理学中的内涵有了更深刻的认识。研究结果对拓宽未来生命伦理学教育、培训和研究的重点领域,将人际关系发展、沟通和诊疗程序等内容纳入其中具有重要意义。我们认为,这些培训领域可以增加相互尊重的医疗护理体验,并有可能通过医疗服务提供者之间的互动和医疗服务的提供,影响长期存在的、已知的社会和结构性健康决定因素。
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引用次数: 0
Understanding drug exceptional access programs (DEAPs) in Canada, and their associated social and political issues. 了解加拿大的药物例外使用计划(DEAPs)及其相关的社会和政治问题。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-03-26 DOI: 10.1186/s12910-024-01038-8
Pierre-Marie David, Kayley Laura Lata, Marie-Eve Bouthillier, Jean-Christophe Bélisle-Pipon

Drug exceptional access programs (DEAPs) exist across Canada to address gaps in access to pharmaceuticals. These programs circumvent standard procedures, raising epistemic, economic, social and political issues. This commentary provides insights into these issues by revealing the context and procedures on which these programs depend.

加拿大各地都有药品例外获取计划 (DEAP),以解决药品获取方面的差距。这些计划规避了标准程序,引发了认识论、经济、社会和政治问题。本评论通过揭示这些计划所依赖的背景和程序,对这些问题提出了见解。
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引用次数: 0
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BMC Medical Ethics
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