Morals

道德
  • 文章类型: Journal Article
    背景:历史上,流行病伴随着耻辱的同时出现,偏见,和仇外心理。此范围审查旨在描述和绘制针对有关猴痘(mpox)的道德价值观的已发表研究。此外,它旨在了解与水痘相关的污名相关的研究空白。
    方法:我们全面搜索了数据库(PubMedCentral,PubMedMedline,Scopus,WebofScience,奥维德,和GoogleScholar),以确定从2022年5月6日至2023年2月15日发表的有关天花道德问题和污名的文献。使用的关键搜索词是“猴痘”,“道德”,“道德”,“社会耻辱”,\"隐私\",\"保密性\",\"保密\",\"特权\",“利己主义”,和“元伦理”。这项范围审查遵循了Arksey和O\'Malley在2005年提出的框架,并通过Levac等人的建议得到了进一步的改进。2010年。
    结果:范围审查中采用的搜索策略共产生454篇文章。我们分析了来源,类型,以及检索到的文章/研究的主题。作者能够确定32项符合纳入标准的研究。32项纳入的研究中有6项是主要研究。研究表明,持续的水痘爆发正在与错误信息和社会耻辱的显着激增作斗争。它强调了与天花相关的污名和道德问题的不利影响,这会对患有这种疾病的人产生负面影响。
    结论:这项研究的发现强调了提高公众意识的迫切需要;让民间社会参与进来;促进决策者之间的合作,医学界,和社交媒体平台。这些集体努力对于减轻污名至关重要,避免人与人之间的传播,解决种族主义问题,消除与疫情相关的误解。
    BACKGROUND: Historically, epidemics have been accompanied by the concurrent emergence of stigma, prejudice, and xenophobia. This scoping review aimed to describe and map published research targeting ethical values concerning monkeypox (mpox). In addition, it aimed to understand the research gaps related to mpox associated stigma.
    METHODS: We comprehensively searched databases (PubMed Central, PubMed Medline, Scopus, Web of Science, Ovid, and Google Scholar) to identify published literature concerning mpox ethical issues and stigma from May 6, 2022, to February 15, 2023. The key search terms used were \"monkeypox\", \"ethics\", \"morals\", \"social stigma\", \"privacy\", \"confidentiality\", \"secrecy\", \"privilege\", \"egoism\", and \"metaethics\". This scoping review followed the framework proposed by Arksey and O\'Malley in 2005 and was further improved by the recommendations of Levac et al. in 2010.
    RESULTS: The search strategies employed in the scoping review yielded a total of 454 articles. We analyzed the sources, types, and topics of the retrieved articles/studies. The authors were able to identify 32 studies that met inclusion criteria. Six of the 32 included studies were primary research. The study revealed that the ongoing mpox outbreak is contending with a notable surge in misinformation and societal stigma. It highlights the adverse impacts of stigma and ethical concerns associated with mpox, which can negatively affect people with the disease.
    CONCLUSIONS: The study\'s findings underscore the imperative need to enhance public awareness; involve civil society; and promote collaboration among policymakers, medical communities, and social media platforms. These collective endeavors are crucial for mitigating stigma, averting human-to-human transmission, tackling racism, and dispelling misconceptions associated with the outbreak.
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  • 文章类型: Journal Article
    背景:重症监护病房(ICU)是一个繁忙而复杂的工作场所,与其他医疗保健专业人员相比,一些与工作相关和个人因素使ICU护士更容易受到道德困扰。确定这些因素对于指导未来的研究和预防策略至关重要。本范围审查探讨了这些因素,以介绍有关引发道德困扰的因素的最新知识,并通过审查研究以探索和总结引发ICU护士道德困扰的因素来指导未来的研究。方法:PubMed,EBSCO,我们搜索了CINAHLPlus数据库,以确定2011年至2022年间发表的潜在相关研究.纳入标准:以英语发表的同行评审研究提供了有关ICU护士道德困扰的原因或相关因素的结果。删除618个重复项之后,在标题和摘要筛选后,316篇论文被排除在外,留下71篇文章供全文筛选。另有54篇文章被排除在外,因为它们的结果不包括造成道德困扰的因素,或者不是专门针对ICU护士的,因此,通过归纳方法,最终使用定性内容分析对17项研究进行了分析。文章的发现由两位作者独立提取和编码,并对数据进行分组和分类.结果:导致ICU护士道德困扰的因素的内容类别分为主题和子主题。确定了四个主要主题:无能为力,临终关怀,无效的团队合作,ICU护士的个人特点。结论:这篇综述强调了导致重症监护护士道德困扰的因素,这主要归因于组织气候和ICU临床环境的性质。描述性和干预研究(实验或行动研究)必须调查已识别变量之间的因果关系,以告知管理策略,以改善对ICU护士应对道德困扰的支持。
    Background: The intensive care unit (ICU) is a busy and complex workplace, and several work-related and personal factors are known to make ICU nurses more vulnerable to moral distress than other healthcare professionals. It is crucial to identify these factors to guide future studies and preventive strategies. This scoping review explores such factors to present current knowledge on the factors that trigger moral distress and to guide future research by reviewing studies to explore and summarize factors that trigger moral distress in ICU nurses. Methods: The PubMed, EBSCO, and CINAHL Plus databases were searched to identify potentially relevant studies published between 2011 to 2022. Inclusion criteria: peer-reviewed studies published in English that provided results regarding factors causes or correlated to moral distress in ICU nurses. After removing 618 duplicates, 316 papers were excluded after title and abstract screening, leaving 71 articles for full-text screening. A further 54 articles were excluded as their outcomes did not include factors that caused moral distress, or were not specific to ICU nurses, so 17 studies were eventually analysed using qualitative content analysis through an inductive approach. The findings of the articles were extracted and coded independently by two authors, and data were grouped and categorized. Results: The content categories of factors contributing to ICU nurses\' moral distress were organized into themes and subthemes. Four major themes were identified: Powerlessness, end-of-life care, ineffective teamwork, and personal characteristics of ICU nurses. Conclusions: This review highlights the factors that contribute to moral distress in critical care nurses, which are mainly attributable to the organizational climate and the nature of the ICU clinical environment. Descriptive and intervention studies (experimental or action research) must investigate causality between identified variables to inform management strategies to improve support for ICU nurses\' coping relative to moral distress.
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  • 文章类型: Journal Article
    对顺序道德行为(SMB)的实验研究发现,从事最初的道德(或不道德)行为有时会导致道德平衡(即,在积极和消极行为之间切换),有时转向道德一致性(即,保持积极或消极行为的一致模式)。在两个荟萃分析中,我们提出了SMB研究和测试主持人的第一个全面综合,以确定道德平衡和道德一致性最有可能发生的条件。荟萃分析1(k=217效应大小,N=31,242)表明,从事最初的积极行为只会可靠地导致道德许可(即,平衡)在测量消极目标行为的研究中(对冲\'g=0.25,95%CI[0.16,0.44]),并且仅在使用亲社会要求(对冲\'g=-0.44,95%CI[-0.59,-0.29])的上门研究中产生正一致性。荟萃分析2(k=132效应大小,N=14,443)揭示,从事最初的消极行为只能可靠地导致道德补偿(即,平衡)在测量积极目标行为参与度的研究中(对冲=0.27,95%CI[0.18,0.37])。我们没有发现在任何情况下可靠的负面一致性影响的证据。这些结果不能用当前的SMB效应理论来解释,因此,需要进一步的研究来更好地理解在观察到的条件下推动道德平衡和一致性的机制。(PsycInfo数据库记录(c)2024APA,保留所有权利)。
    Experimental research on sequential moral behavior (SMB) has found that engaging in an initial moral (or immoral) behavior can sometimes lead to moral balancing (i.e., switching between positive and negative behavior) and sometimes to moral consistency (i.e., maintaining a consistent pattern of positive or negative behavior). In two meta-analyses, we present the first comprehensive syntheses of SMB studies and test moderators to identify the conditions under which moral balancing and moral consistency are most likely to occur. Meta-Analysis 1 (k = 217 effect sizes, N = 31,242) revealed that engaging in an initial positive behavior only reliably resulted in moral licensing (i.e., balancing) in studies that measured engagement in negative target behaviors (Hedges\' g = 0.25, 95% CI [0.16, 0.44]) and only resulted in positive consistency in foot-in-the-door studies using prosocial requests (Hedges\' g = -0.44, 95% CI [-0.59, -0.29]). Meta-Analysis 2 (k = 132 effect sizes, N = 14,443) revealed that engaging in an initial negative behavior only reliably resulted in moral compensation (i.e., balancing) in studies that measured engagement in positive target behaviors (Hedges\' g = 0.27, 95% CI [0.18, 0.37]). We found no evidence for reliable negative consistency effects in any conditions. These results cannot be readily explained by current theories of SMB effects, and so further research is needed to better understand the mechanisms that drive moral balancing and consistency under the conditions observed. (PsycInfo Database Record (c) 2024 APA, all rights reserved).
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  • 文章类型: Journal Article
    目标:在他们职业生涯的某个阶段,许多医护人员会经历与无法采取道德或道德上正确的行动有关的心理困扰,因为它符合他们自己的价值观;一种被称为道德困扰的现象。同样,有越来越多的报告说,医护人员经历了长期的精神和心理痛苦,除了内部不和谐,被称为道德伤害。这篇综述研究了在一系列临床环境中使用的健康和社会护理人员(HSCW)中与道德困扰和伤害相关的触发因素和因素,目的是了解如何减轻道德困扰的影响并确定潜在的预防性干预措施。
    方法:根据Cochrane和系统评价和荟萃分析指南的首选报告项目的建议进行系统评价和报告。在2024年1月之前,对2个主要数据库进行了定期搜索和更新(CENTRAL,PubMed)和三个专业数据库(Scopus,CINAHL,PsycArticles),同时手工搜索研究登记数据库和其他系统评价参考列表。符合条件的研究包括HSCW样本,探索道德困扰/伤害作为主要目标,用英语或意大利语写的.逐字引用被提取,文章质量通过CASP工具包进行评估。进行了主题分析,以确定模式并将代码安排到主题中。探讨了文化和多样性等具体因素,以及大流行等特殊情况的影响。
    结果:49项研究的51份报告被纳入综述。原因和触发因素分为三个领域:个人,社会,和组织。在个人层面,患者的护理选择,专业人士的信仰,控制源,任务规划,以及根据经验做出决定的能力,被指示为可能导致或引发道德困扰的元素。此外,与CoVID-19大流行有关,使用/访问个人保护资源。社会或关系因素与倡导和与患者及家属沟通的责任有关,和专业人员自己的支持网络。在组织层面,层次结构,法规,支持,工作量,文化,和资源(人员和设备)被确定为可能影响专业人员道德舒适度的要素。病人护理,道德/信仰/标准,宣传作用和背景文化是最有参考意义的要素。关于文化差异和多样性的数据不足以做出假设。缺乏资源和迅速的政策变化已成为与大流行有关的关键触发因素。这表明,那些负责政策决定的人应该注意突然和自上而下的变化对工作人员的潜在影响。
    结论:这篇综述表明,道德伤害的原因和触发因素是多因素的,并且在很大程度上受专业人员工作的背景和制约因素的影响。道德困扰与照顾的义务和责任有关,和专业人员优先考虑患者的健康。如果组织的价值观和规章制度与个人的信仰相反,对专业人士的健康和保留的影响是可以预期的。减轻道德困扰的组织策略,或长期的道德伤害后遗症,应该针对个人,社会,以及本次审查中确定的组织要素。
    OBJECTIVE: At some point in their career, many healthcare workers will experience psychological distress associated with being unable to take morally or ethically correct action, as it aligns with their own values; a phenomenon known as moral distress. Similarly, there are increasing reports of healthcare workers experiencing long-term mental and psychological pain, alongside internal dissonance, known as moral injury. This review examined the triggers and factors associated with moral distress and injury in Health and Social Care Workers (HSCW) employed across a range of clinical settings with the aim of understanding how to mitigate the effects of moral distress and identify potential preventative interventions.
    METHODS: A systematic review was conducted and reported according to recommendations from Cochrane and Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Searches were conducted and updated regularly until January 2024 on 2 main databases (CENTRAL, PubMed) and three specialist databases (Scopus, CINAHL, PsycArticles), alongside hand searches of study registration databases and other systematic reviews reference lists. Eligible studies included a HSCW sample, explored moral distress/injury as a main aim, and were written in English or Italian. Verbatim quotes were extracted, and article quality was assessed via the CASP toolkit. Thematic analysis was conducted to identify patterns and arrange codes into themes. Specific factors like culture and diversity were explored, and the effects of exceptional circumstances like the pandemic.
    RESULTS: Fifty-one reports of 49 studies were included in the review. Causes and triggers were categorised under three domains: individual, social, and organisational. At the individual level, patients\' care options, professionals\' beliefs, locus of control, task planning, and the ability to make decisions based on experience, were indicated as elements that can cause or trigger moral distress. In addition, and relevant to the CoVID-19 pandemic, was use/access to personal protection resources. The social or relational factors were linked to the responsibility for advocating for and communication with patients and families, and professionals own support network. At organisational levels, hierarchy, regulations, support, workload, culture, and resources (staff and equipment) were identified as elements that can affect professionals\' moral comfort. Patients\' care, morals/beliefs/standards, advocacy role and culture of context were the most referenced elements. Data on cultural differences and diversity were not sufficient to make assumptions. Lack of resources and rapid policy changes have emerged as key triggers related to the pandemic. This suggests that those responsible for policy decisions should be mindful of the potential impact on staff of sudden and top-down change.
    CONCLUSIONS: This review indicates that causes and triggers of moral injury are multifactorial and largely influenced by the context and constraints within which professionals work. Moral distress is linked to the duty and responsibility of care, and professionals\' disposition to prioritise the wellbeing of patients. If the organisational values and regulations are in contrast with individuals\' beliefs, repercussions on professionals\' wellbeing and retention are to be expected. Organisational strategies to mitigate against moral distress, or the longer-term sequalae of moral injury, should address the individual, social, and organisational elements identified in this review.
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  • 文章类型: Systematic Review
    目标:兽医和其他动物卫生专业人员的心理健康受到他们遇到的心理压力的显着影响,比如安乐死,目睹动物的痛苦和道德的痛苦。道德困扰,最初在护理中发现,当个人意识到正确的行动,但受到制度约束的阻碍时,就会出现。我们旨在通过关注其测量的识别和心理测量效度,来回顾有关动物护理工作者道德困扰量表的现有研究。
    方法:两步系统评价。首先,我们在符合条件的原始研究中确定了动物护理研究中使用的所有道德困扰量表.第二,我们评估了他们的心理测量效度,强调内容的有效性,这是患者报告结果测量(PROM)的一个关键方面。此评估符合基于共识的健康测量仪器选择标准(COSMIN)。根据系统评价和荟萃分析的首选报告项目报告结果。
    方法:PubMed,EMBASE和PsycINFO搜索1984年1月至2023年4月之间发表的符合条件的研究。
    方法:我们包括原始(主要)研究,(1)在动物护理工作者中进行;(2)描述道德困扰量表的发展,或验证道德困境量表的原始或修改版本,评估COSMIN指南中提到的至少一种心理测量特性。
    方法:两个独立的审阅者使用标准化方法进行搜索,屏幕和代码包括研究。我们考虑了以下与提取相关的信息:研究参考,使用的道德困扰量表的名称和参考,心理测量属性评估及其评估方法和结果。然后将收集的信息汇总在叙事综合中。
    结果:该评论仅确定了一个专门针对兽医环境的PROM:动物专业人员道德困扰措施(MMD-AP),源自医疗保健专业人员道德困扰的衡量标准(MMD-HP)。对MMD-HP和MMD-AP进行了开发质量和内容效度评估。这两项措施的发展质量被认为是可疑的。根据COSMIN,MMD-HP的内容有效性被评为足够,而MMD-AP不一致。然而,两种PROM的证据质量均被评为较低。
    结论:这是对动物护理工作者道德困扰测量的第一个系统综述。它表明,很少使用标准化和基于证据的方法来衡量道德困境,并且应在动物护理的背景下开发和验证此类方法。
    CRD42023422259。
    OBJECTIVE: The mental health of veterinary and other animal health professionals is significantly impacted by the psychological stressors they encounter, such as euthanasia, witnessing animal suffering and moral distress. Moral distress, initially identified in nursing, arises when individuals are aware of the right action but are hindered by institutional constraints. We aimed to review existing research on moral distress scales among animal care workers by focusing on the identification and psychometric validity of its measurement.
    METHODS: Two-step systematic review. First, we identified all moral distress scales used in animal care research in the eligible original studies. Second, we evaluated their psychometric validity, emphasising content validity, which is a critical aspect of patient-reported outcome measures (PROMs). This evaluation adhered to the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN). The results were reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses.
    METHODS: PubMed, EMBASE and PsycINFO to search for eligible studies published between January 1984 and April 2023.
    METHODS: We included original (primary) studies that (1) were conducted in animal care workers; (2) describing either the development of a moral distress scale, or validation of a moral distress scale in its original or modified version, to assess at least one of the psychometric properties mentioned in COSMIN guidelines.
    METHODS: Two independent reviewers used standardised methods to search, screen and code included studies. We considered the following information relevant for extraction: study reference, name and reference of the moral distress scale used, psychometric properties assessed and methods and results of their assessments. The collected information was then summarised in a narrative synthesis.
    RESULTS: The review identified only one PROM specifically adapted for veterinary contexts: the Measure of Moral Distress for Animal Professionals (MMD-AP), derived from the Measure of Moral Distress for Healthcare Professionals (MMD-HP). Both MMD-HP and MMD-AP were evaluated for the quality of development and content validity. The development quality of both measures was deemed doubtful. According to COSMIN, MMD-HP\'s content validity was rated as sufficient, whereas MMD-AP\'s was inconsistent. However, the evidence quality for both PROMs was rated low.
    CONCLUSIONS: This is the first systematic review focused on moral distress measurement in animal care workers. It shows that moral distress is rarely measured using standardised and evidence-based methods and that such methods should be developed and validated in the context of animal care.
    UNASSIGNED: CRD42023422259.
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  • 文章类型: Journal Article
    人们对其他人感到忠诚,groups,组织,或日常生活中的道德规范。这种社会承诺可以带来积极的结果,例如提高工作满意度或关系寿命;然而,对承诺的感觉也可能有不利影响。安然或大众汽车等公司最近备受瞩目的欺诈或腐败案件可能受到对该组织或同事的坚定承诺的影响。尽管社会承诺可能会增加不诚实的行为,很少有关于何时以及如何发生这种情况的系统知识。在本项目中,我们审阅了20988篇文章,专注于实验性操纵社会承诺和衡量不诚实行为的研究。我们保留了121篇文章中的445种效应大小,共有来自33个国家的91,683名参与者。我们没有发现社会承诺增加或减少不诚实行为的证据。尽管如此,我们确实发现了证据,表明效果在很大程度上取决于承诺的目标。对其他个人或团体的忠诚会降低诚实行为(g=-0.17[-0.24,-0.11]),而通过诚实宣誓或承诺来致力于诚实规范的感觉会增加诚实行为(g=0.27[0.19,0.36])。分析确定了几个调节变量,并检测到不同效应的某种程度的发表偏差。我们的发现强调了不同形式的社会承诺对不诚实行为的不同影响,并建议不同形式的承诺的组合可能是在组织背景下打击腐败和不诚实行为的可能手段。(PsycInfo数据库记录(c)2024APA,保留所有权利)。
    People feel committed to other individuals, groups, organizations, or moral norms in many contexts of everyday life. Such social commitment can lead to positive outcomes, such as increased job satisfaction or relationship longevity; yet, there can also be detrimental effects to feeling committed. Recent high-profile cases of fraud or corruption in companies like Enron or Volkswagen are likely influenced by strong commitment to the organization or coworkers. Although social commitment might increase dishonest behavior, there is little systematic knowledge about when and how this may occur. In the present project, we reviewed 20,988 articles, focusing on studies that experimentally manipulated social commitment and measured dishonest behavior. We retained 445 effect sizes from 121 articles featuring a total of 91,683 participants across 33 countries. We found no evidence that social commitment increases or reduces dishonest behavior in general. Nonetheless, we did find evidence that the effect strongly depends on the target of the commitment. Feeling committed to other individuals or groups reduces honest behavior (g = -0.17 [-0.24, -0.11]), whereas feeling committed to honesty norms through honesty oaths or pledges increases honest behavior (g = 0.27 [0.19, 0.36]). The analysis identified several moderating variables and detected some degree of publication bias across effects. Our findings highlight the diverging effects of different forms of social commitment on dishonest behavior and suggest a combination of the different forms of commitment could be a possible means to combat corruption and dishonest behavior in the organizational context. (PsycInfo Database Record (c) 2024 APA, all rights reserved).
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  • 文章类型: Systematic Review
    背景:护士在照顾患者时面临各种道德冲突,这种冲突需要道德勇气。本系统评价旨在调查护士的道德勇气及其相关因素。
    方法:为了找到相关的研究,遵循系统审查和荟萃分析(PRISMA)指南的首选报告项目。PubMed,WebofScience,谷歌学者,Scopus,使用Courage等关键字搜索Embase和ScienceDirect数据库,道德勇气,还有护士,并且在进行搜索时没有施加较低的时间限制。已确定的研究发表于2000年1月至2023年3月之间。使用STROBE检查表评估文章的质量。
    结果:19项纳入研究的合并样本量为7863。所有研究均为观察性和横断面研究。结果表明,与道德勇气最相关的三类因素是个体,道德,以及与组织相关的因素。本文还提供了每个类别的基本因素。
    结论:道德勇气是护理不可或缺的一部分,作为一种职业,随着科学技术的进步,挑战越来越大。因此,护士,特别是护理管理者需要考虑影响护士道德勇气的因素,以加强积极因素,减少负面影响。
    BACKGROUND: Nurses face various ethical conflicts when taking care of patients, and such conflicts require moral courage. This systematic review was conducted with the aim of investigating moral courage and its related factors among nurses.
    METHODS: To find related studies, the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed. The PubMed, Web of Science, Google Scholar, Scopus, Embase and Science Direct databases were searched using keywords such as Courage, Moral Courage, and Nurses, and no lower time limit was imposed when conducting the searches. The identified studies were published between January 2000 and March 2023. Quality of articles was assessed using the STROBE checklist.
    RESULTS: The pooled sample size for the 19 included studies was 7863. All studies were observational and cross-sectional. The results showed that three categories of factors most related to moral courage are individual, moral, and factors related to the organization. Underlying factors of each category are also provided within this paper.
    CONCLUSIONS: Moral courage is an integral part of nursing, which as a profession, is becoming even more challenging with the advancement of science and technology. Therefore, there is a need for nurses and especially nursing managers to be considerate of factors affecting moral courage of nurses, with a view to strengthening the positive factors and reducing the negative impacts.
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  • 文章类型: Systematic Review
    在过去几年中,关于多基因风险评分(PRS)的前瞻性临床使用的辩论已大大增加。已经广泛强调了PRS在个人和人群水平上改善患者护理的潜在益处。尽管如此,在临床环境中使用PRS带来了许多尚未解决的伦理挑战和随之而来的规范差距,阻碍了其最佳实施.这里,我们对规范性文献的原因进行了系统回顾,这些文献讨论了与使用PRS预防和治疗常见复杂疾病有关的伦理问题和道德论点.总的来说,我们包含并分析了34条记录,从2013年到2023年。研究结果分为三个主要主题:在第一个主题中,我们考虑PRS对个人及其亲属的潜在危害。在主题“对健康公平的威胁”中,“我们考虑与社会相关的伦理问题,专注于正义问题。最后,主题“迈向最佳实践”收集了一系列研究重点和临时建议,以考虑PRS的最佳临床翻译。我们得出的结论是,在临床护理中使用PRS重振了健康正义问题上的旧辩论;但是,开放的问题,关于临床咨询的最佳实践,建议适用于单基因环境的伦理考虑不足以应对PRS新出现的挑战。
    Debates about the prospective clinical use of polygenic risk scores (PRS) have grown considerably in the last years. The potential benefits of PRS to improve patient care at individual and population levels have been extensively underlined. Nonetheless, the use of PRS in clinical contexts presents a number of unresolved ethical challenges and consequent normative gaps that hinder their optimal implementation. Here, we conducted a systematic review of reasons of the normative literature discussing ethical issues and moral arguments related to the use of PRS for the prevention and treatment of common complex diseases. In total, we have included and analyzed 34 records, spanning from 2013 to 2023. The findings have been organized in three major themes: in the first theme, we consider the potential harms of PRS to individuals and their kin. In the theme \"Threats to health equity,\" we consider ethical concerns of social relevance, with a focus on justice issues. Finally, the theme \"Towards best practices\" collects a series of research priorities and provisional recommendations to be considered for an optimal clinical translation of PRS. We conclude that the use of PRS in clinical care reinvigorates old debates in matters of health justice; however, open questions, regarding best practices in clinical counseling, suggest that the ethical considerations applicable in monogenic settings will not be sufficient to face PRS emerging challenges.
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  • 文章类型: Review
    背景:在关于胎儿和新生儿结局的文献中,以残疾为特征的短寿命的价值一直存在激烈争论。
    方法:我们进行了范围审查,以总结有关13和18三体(T13/18)背景下家庭经验的现有经验文献,并随后对17篇文章进行主题分析。
    结果:构造的主题包括(1)骄傲作为抵抗,(2)谈判常态和(3)时间的意义。
    结论:我们的主题分析是由Hunt和Carnevale(2011)与VOICE(跨学科儿童伦理学观点)合作研究小组共同构想的道德经验框架指导的。
    结论:本文将对支持T13/18医学和道德复杂景观的家庭的医疗保健专业人员和生物伦理学家感兴趣和有价值。
    BACKGROUND: The value of a short life characterized by disability has been hotly debated in the literature on fetal and neonatal outcomes.
    METHODS: We conducted a scoping review to summarize the available empirical literature on the experiences of families in the context of trisomy 13 and 18 (T13/18) with subsequent thematic analysis of the 17 included articles.
    RESULTS: Themes constructed include (1) Pride as Resistance, (2) Negotiating Normalcy and (3) The Significance of Time.
    CONCLUSIONS: Our thematic analysis was guided by the moral experience framework conceived by Hunt and Carnevale (2011) in association with the VOICE (Views On Interdisciplinary Childhood Ethics) collaborative research group.
    CONCLUSIONS: This article will be of interest and value to healthcare professionals and bioethicists who support families navigating the medically and ethically complex landscape of T13/18.
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  • 文章类型: Review
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