• 【自我疼痛: 未来可能的自我、社会的特性、自主性和对慢性疼痛的适应。】 复制标题 收藏 收藏
    影响因子 :
    发表时间:2008-07-15
    来源期刊:Pain
    DOI:10.1016/j.pain.2007.09.023 复制DOI
    作者列表:Sutherland R,Morley S
    BACKGROUND & AIMS: :The aims of this study were to replicate and extend previous observations on the relationship between enmeshment of the self and pain and measures of adjustment [Morley et al., Possible selves in chronic pain: self-pain enmeshment, adjustment and acceptance, Pain 2005;115:84-94], and to test the hypothesis that individual variation in motivational preferences interacts with enmeshment. 82 chronic pain patients completed standardized self-report measures of depression, anxiety, acceptance and the possible selves interview which generated measures of their hoped-for (own and other perspectives) and feared-for selves. They made judgments about the conditionality of each self on the continuing presence of pain as a measure of self-pain enmeshment. A series of hierarchical regression analyses, that adjusted for demographics, pain characteristics and disability, confirmed the relationship between self enmeshment and depression and acceptance. When anxiety was considered, there was no main effect for any of the self aspects but there were specific interactions between the hoped-for (own) and (other) selves and two motivational preferences--autonomy and sociotropy.
    背景与目标: : 这项研究的目的是复制和扩展以前关于自我与疼痛之间的关系以及调整措施的观察 [Morley等人,慢性疼痛中的可能自我: 自我疼痛,调整和接受,疼痛2005;115:84-94],并检验以下假设: 激励偏好的个体变化与环境相互作用。82名慢性疼痛患者完成了抑郁,焦虑,接受和可能的自我访谈的标准化自我报告措施,这些措施产生了他们希望 (自己和其他观点) 和恐惧自我的措施。他们对每个自我对持续存在的痛苦的条件做出判断,以此作为自我痛苦的衡量标准。根据人口统计学,疼痛特征和残疾进行了一系列分层回归分析,证实了自我感觉与抑郁和接受之间的关系。当考虑焦虑时,任何自我方面都没有主要影响,但是希望的 (自己) 和 (其他) 自我之间存在特定的相互作用,以及两种动机偏好-自主性和社会向性。
  • 【医师的专业自主权及其对医院的组织认同。】 复制标题 收藏 收藏
    DOI:10.1186/s12913-018-3582-z 复制DOI
    作者列表:Salvatore D,Numerato D,Fattore G
    BACKGROUND & AIMS: BACKGROUND:Managing medical professionals is challenging because professionals tend to adhere to a set of professional norms and enjoy autonomy from supervision. The aim of this paper is to study the interplay of physicians' professional identity, their organizational identity, and the role of professional autonomy in these processes of social identification. METHODS:We test hypotheses generated according to social identity theory using a survey of physicians working in public hospitals in Italy in 2013. RESULTS:Higher degrees of organizational and economic professional autonomy are correlated with higher organizational identification. Identification with the profession is positively correlated with identification with the organization. CONCLUSIONS:Although the generalizability of our results is limited, this study suggests that organizations should support the organizational and economic autonomy of their physicians to project an organizational identity that preserves the continuity of a doctor's self-concept and that is evaluated as positive by doctors. As a result, organizations will be able to foster organizational identification, which is potentially capable of inducing pro-social organizational behavior.
    背景与目标:
  • 【机动空间?在英国国家卫生局解释地方自治。】 复制标题 收藏 收藏
    DOI:10.1016/j.healthpol.2007.10.008 复制DOI
    作者列表:Exworthy M,Frosini F
    BACKGROUND & AIMS: :Decentralisation has returned as a key theme in English health policy in recent years in policies such as Patient Choice and Foundation Trusts, among many others. The goal of these policies appears to be to stimulate self-sustaining incentives to continuous organisational reform and performance improvement through creating a pluralist model of local provision. However, the ability of local organisations to exercise autonomy and to deliver such performance is highly contingent upon their local context, not least in terms of existing patterns of dependencies. Explaining variation in local outcomes of national policies demands an understanding and explanation of local autonomy and its effect on performance which takes into account the role of the local 'health economy'--the local context within which organizations are embedded. It is this combination of vertical and horizontal autonomy which effectively determines the local room for manoeuvre in decision-making. The aim of the paper is to examine the local dimension of decentralisation policies. It draws from different strands of literature to discuss the room for manoeuvre of local organisations within local health economies in England with specific reference to Primary Care Trusts. It draws conclusions about the nature of decentralisation itself and the impact of such policies.
    背景与目标: : 近年来,在患者选择和基金会信托等政策中,权力下放已成为英国卫生政策的关键主题。这些政策的目标似乎是通过创建多元化的本地供应模式来刺激自我维持的激励措施,以持续进行组织改革和绩效改善。但是,地方组织行使自治权并提供这种绩效的能力在很大程度上取决于其本地环境,尤其是就现有的依赖模式而言。解释国家政策的地方结果的差异需要理解和解释地方自治及其对绩效的影响,其中要考虑到地方 “健康经济” 的作用-组织所处的地方环境。正是这种纵向和横向自主的结合有效地决定了决策的局部回旋余地。本文的目的是研究权力下放政策的地方层面。它借鉴了不同的文献,讨论了英格兰当地卫生经济体中地方组织的回旋余地,并特别提到了初级保健信托基金。它得出了关于权力下放本身的性质以及此类政策的影响的结论。
  • 【重新获得代理和自主权: 隐匿妊娠的扎根类型学。】 复制标题 收藏 收藏
    DOI:10.1111/jan.13875 复制DOI
    作者列表:Murphy-Tighe S,Lalor JG
    BACKGROUND & AIMS: AIM:To explore and understand the experience of concealed pregnancy and develop a framework for practitioners. BACKGROUND:Numerous cases of concealed pregnancy resulting in serious outcomes including maternal and perinatal death, newborn abandonment, and neonaticide are reported internationally. Historically concealed pregnancy is associated with oppressive religious cultures where premarital pregnancy was shunned. Concealed pregnancy has traditionally been viewed through a biomedical lens and associated with mental illness but this assertion remains unsubstantiated by robust evidence. DESIGN:A Glaserian grounded theory study was undertaken. DATA SOURCES:Thirty women were interviewed, between 2014 - 2016, on up to three occasions (46 interviews) and 22 cases of public interest were included as data. METHODS:The constant comparative method and theoretical sampling which are the analytical strategies of grounded theory were used to analyse the data and generate the typology. RESULTS:Concealed pregnancy is a fearful, life-altering, and traumatic experience. Women with a history of controlling and oppressive relationships characterized by fear respond to a crisis pregnancy by keeping it secret. Many women's relationships were characterized by emotional, mental, sexual, or physical violence. Fear for one's survival is common, may render women unable to access care or support and can be so extreme that a woman may end her own life or give birth alone. CONCLUSIONS:This typology of concealed pregnancy is intended to aid understanding the fear, trauma, and complexities associated with concealed pregnancy which is vital if practitioners are to provide sensitive, responsive and non-judgemental care.
    背景与目标:
  • 【基于社区的保护和保护动机的社会心理学原则: 在自治支持的环境中实现目标。】 复制标题 收藏 收藏
    DOI:10.1111/j.1523-1739.2008.00996.x 复制DOI
    作者列表:Decaro D,Stokes M
    BACKGROUND & AIMS: :Community-based natural resource conservation programs in developing nations face many implementation challenges underpinned by social-psychological mechanisms. One challenge is garnering local support in an economically and socially sustainable fashion despite economic hardship and historical alienation from local resources. Unfortunately, conservationists' limited understanding of the social-psychological mechanisms underlying participatory conservation impedes the search for appropriate solutions. We address this issue by revealing key underlying social-psychological mechanisms of participatory conservation. Different administrative designs create social atmospheres that differentially affect endorsement of conservation goals. Certain forms of endorsement may be less effective motivators and less economically and socially sustainable than others. From a literature review we found that conservation initiatives endorsed primarily for nonautonomous instrumental reasons, such as to avoid economic fines or to secure economic rewards, are less motivating than those endorsed for autonomous reasons, such as for the opportunity for personal expression and growth. We suggest that successful participatory programs promote autonomous endorsement of conservation through an administrative framework of autonomy support-free and open democratic participation in management, substantive recognition and inclusion of local stakeholder identity, and respectful, noncoercive social interaction. This framework of the autonomy-supportive environment (self-determination theory) has important implications for future research into program design and incentive-based conservation and identifies a testable social-psychological theory of conservancy motivation.
    背景与目标: : 发展中国家基于社区的自然资源保护计划面临许多由社会心理机制支撑的实施挑战。尽管经济困难和历史上与当地资源的疏远,但挑战之一是以经济和社会可持续的方式获得当地支持。不幸的是,保护主义者对参与式保护背后的社会心理机制的有限理解阻碍了寻求适当的解决方案。我们通过揭示参与性保护的关键潜在社会心理机制来解决这个问题。不同的行政设计会创造不同的社会氛围,从而不同地影响对保护目标的认可。与其他形式相比,某些形式的认可可能是不那么有效的激励因素,并且在经济和社会上的可持续性较差。从文献回顾中,我们发现主要出于非自主的工具原因 (例如避免经济罚款或获得经济回报) 而认可的保护计划的动机不如出于自主原因 (例如个人表达和成长的机会) 而认可的保护计划。我们建议成功的参与性计划通过自治支持的行政框架来促进对保护的自主认可-自由和开放的民主参与管理,实质性承认和纳入当地利益相关者的身份以及尊重,非强制性的社会互动。自治支持环境 (自决理论) 的框架对未来对计划设计和基于激励的保护的研究具有重要意义,并确定了可检验的保护动机的社会心理学理论。
  • 6 Neuromodulation, agency and autonomy. 复制标题 收藏 收藏

    【神经调节、代理和自主性。】 复制标题 收藏 收藏
    DOI:10.1007/s10548-012-0269-3 复制DOI
    作者列表:Glannon W
    BACKGROUND & AIMS: :Neuromodulation consists in altering brain activity to restore mental and physical functions in individuals with neuropsychiatric disorders and brain and spinal cord injuries. This can be achieved by delivering electrical stimulation that excites or inhibits neural tissue, by using electrical signals in the brain to move computer cursors or robotic arms, or by displaying brain activity to subjects who regulate that activity by their own responses to it. As enabling prostheses, deep-brain stimulation and brain-computer interfaces (BCIs) are forms of extended embodiment that become integrated into the individual's conception of himself as an autonomous agent. In BCIs and neurofeedback, the success or failure of the techniques depends on the interaction between the learner and the trainer. The restoration of agency and autonomy through neuromodulation thus involves neurophysiological, psychological and social factors.
    背景与目标: : 神经调节包括改变大脑活动,以恢复患有神经精神疾病以及脑和脊髓损伤的个体的精神和身体功能。这可以通过传递激发或抑制神经组织的电刺激,通过使用大脑中的电信号来移动计算机光标或机械臂,或者通过向通过自己的反应来调节该活动的受试者显示大脑活动来实现。作为启用假体,深部脑刺激和脑机接口 (BCIs) 是扩展实施形式的形式,它们被整合到个人将自己视为自主代理的概念中。在BCIs和神经反馈中,技术的成败取决于学习者和培训师之间的互动。因此,通过神经调节恢复代理和自主性涉及神经生理,心理和社会因素。
  • 【支持中风患者康复期间的自主权。】 复制标题 收藏 收藏
    DOI:10.1177/0969733007073705 复制DOI
    作者列表:Proot IM,ter Meulen RH,Abu-Saad HH,Crebolder HF
    BACKGROUND & AIMS: :In a qualitative study, 22 stroke patients undergoing rehabilitation in three nursing homes were interviewed about constraints on and improvements in their autonomy and about approaches of health professionals regarding autonomy. The data were analysed using grounded theory, with a particular focus on the process of regaining autonomy. An approach by the health professionals that was responsive to changes in the patients' autonomy was found to be helpful for restoration of their autonomy. Two patterns in health professionals' approach appeared to be facilitatory: (1) from full support on admission through moderate support and supervision, to reduced supervision at discharge; and (2) from paternalism on admission through partial paternalism (regarding treatment) to shared decision making at discharge. The approach experienced by the patients did not always match their desires regarding their autonomy. Support and supervision were reduced over time, but paternalism was often continued too long. Additionally, the patients experienced a lack of information. Tailoring interventions to patients' progress in autonomy would stimulate their active participation in rehabilitation and in decision making, and would improve patients' preparation for autonomous living after discharge.
    背景与目标: : 在一项定性研究中,采访了在三个疗养院接受康复治疗的22名中风患者,他们的自主权受到限制和改善,以及卫生专业人员在自主权方面的方法。使用扎根理论对数据进行了分析,特别关注恢复自治的过程。发现卫生专业人员对患者自主权变化做出反应的方法有助于恢复其自主权。卫生专业人员的方法似乎有两种模式是有利的 :( 1) 从入院时的全力支持到适度的支持和监督,到出院时的监督减少; (2) 从入院时的家长制到部分家长制 (关于治疗) 到出院时的共同决策。患者所经历的方法并不总是符合他们对自主性的渴望。随着时间的推移,支持和监督减少了,但家长式作风往往持续太久。此外,患者缺乏信息。根据患者的自主性进展量身定制干预措施将刺激他们积极参与康复和决策,并改善患者出院后自主生活的准备。
  • 8 Coercive treatment and autonomy in psychiatry. 复制标题 收藏 收藏

    【精神病学中的强制治疗和自主性。】 复制标题 收藏 收藏
    DOI:10.1111/j.1467-8519.2007.00610.x 复制DOI
    作者列表:Sjöstrand M,Helgesson G
    BACKGROUND & AIMS: :There are three lines of argument in defence of coercive treatment of patients with mental disorders: arguments regarding (1) societal interests to protect others, (2) the patients' own health interests, and (3) patient autonomy. In this paper, we analyse these arguments in relation to an idealized case, where a person with a mental disorder claims not to want medical treatment for religious reasons. We also discuss who should decide what in situations where patients with mental disorders deny treatment on seemingly rational grounds. We conclude that, in principle, coercive treatment cannot be defended for the sake of protecting others. While coercive actions can be acceptable in order to protect close family and others, medical treatment is not justified for such reasons but should be given only in the interest of patients. Coercive treatment may be required in order to promote the patient's health interests, but health interests have to waive if they go against the autonomous interests of the patient. We argue that non-autonomous patients can have reasons, rooted in their deeply-set values, to renounce compulsory institutional treatment, and that such reasons should be respected unless it can be assumed that their new predicaments have caused them to change their views.
    背景与目标: : 捍卫对精神障碍患者的强制治疗有三个论点: 关于 (1) 保护他人的社会利益,(2) 患者自身的健康利益和 (3) 患者自主权的论点。在本文中,我们分析了与理想化案件有关的这些论点,在该案件中,有精神障碍的人声称出于宗教原因不想接受治疗。我们还讨论了在精神障碍患者以看似合理的理由拒绝治疗的情况下,谁应该决定什么。我们得出的结论是,原则上不能为了保护他人而捍卫强制性待遇。虽然为了保护亲密的家人和其他人,强制行动是可以接受的,但由于这些原因,医疗是不合理的,而应该只为了患者的利益。为了促进患者的健康利益,可能需要强制治疗,但是如果健康利益违背了患者的自主利益,则必须放弃。我们认为,非自主患者可以有理由放弃强制性的机构治疗,这些理由植根于他们根深蒂固的价值观,除非可以假设他们的新困境导致他们改变了观点,否则应该尊重这些理由。
  • 【类固醇自主性的发展伴随着S115小鼠乳腺肿瘤细胞对生长因子的敏感性改变。】 复制标题 收藏 收藏
    DOI:10.1016/0960-0760(95)00119-k 复制DOI
    作者列表:Daly RJ,Carrick N,Darbre PD
    BACKGROUND & AIMS: :Progression to steroid autonomy is a major clinical problem in the treatment of steroid-sensitive tumours. Molecular mechanisms remain unknown but recent hypotheses imply a role for growth factors in this progression. Since S115 + A androgen-responsive mouse mammary tumour cells provide a model system to study this phenomenon in vitro, we have used this model to investigate growth factor gene expression and sensitivity during progression from a steroid sensitive to insensitive state. S115 + A androgen-responsive cells showed a positive proliferative response, morphological response and increased saturation density to various forms of fibroblast growth factor (FGF) and transforming growth factor beta (TGF beta) in both monolayer and suspension culture. A marked synergy was noted, however, between FGF and TGF beta in promoting growth in suspension culture. S115 + A cells possessed mRNA for both acidic FGF (aFGF) and TGF beta 1, both of which were increased by testosterone. Progression to androgen insensitivity was associated with a reversal of growth factor response such that all growth factor responses became generally inhibitory on growth of the unresponsive cells but with a particularly striking synergistic action between FGF and TGF beta 1 on inhibition of both monolayer and suspension growth. Levels of aFGF and TGF beta 1 mRNAs remained low in steroid-insensitive S115-A cells, indicating that loss of response was not associated with any constitutive upregulation of endogenous production of one of these growth factors. The scientific and clinical implications are discussed.
    背景与目标: : 进展到类固醇自主性是治疗类固醇敏感性肿瘤的主要临床问题。分子机制仍然未知,但最近的假设暗示生长因子在这一进程中的作用。由于S115 + 雄激素反应性小鼠乳腺肿瘤细胞提供了一个模型系统来在体外研究这种现象,我们已经使用该模型来研究生长因子基因表达和从类固醇敏感到不敏感状态的过程中的敏感性。在单层和悬浮培养中,S115 A雄激素反应细胞对各种形式的成纤维细胞生长因子 (FGF) 和转化生长因子 β (TGF β) 均显示出阳性的增殖反应,形态反应和饱和密度增加。然而,在促进悬浮培养的生长方面,FGF和TGF β 之间存在明显的协同作用。S115 A细胞同时具有酸性FGF (aFGF) 和tgfβ1的mRNA,两者均被睾丸激素增加。对雄激素不敏感的进展与生长因子反应的逆转有关,因此所有生长因子反应通常都抑制无反应细胞的生长,但在FGF和tgfβ1之间具有特别显着的协同作用,抑制单层和悬浮液的生长。在类固醇不敏感的S115-A细胞中,aFGF和tgfβ1 mrna的水平仍然很低,这表明反应的丧失与这些生长因子之一的内源性产生的任何组成性上调无关。讨论了科学和临床意义。
  • 【康复服务成果的数字机会 (DOORS): 务实的动手小组方法,旨在提高数字健康和智能手机能力,自主性,相关性和严重精神疾病患者的联盟。】 复制标题 收藏 收藏
    DOI:10.1097/PRA.0000000000000450 复制DOI
    作者列表:Hoffman L,Wisniewski H,Hays R,Henson P,Vaidyam A,Hendel V,Keshavan M,Torous J
    BACKGROUND & AIMS: :Digital health technologies such as smartphones present the potential for increased access to care and on-demand services. However, many patients with serious mental illnesses (eg, schizophrenia) have not been offered the digital health training necessary to fully utilize these innovative approaches. To bridge this digital divide in knowledge and skills, we created a hands-on and interactive training program grounded in self-determination theory, technology use cases, and the therapeutic alliance. This article introduces the need and theoretical foundation for and the experience of running the resulting Digital Opportunities for Outcomes in Recovery Services (DOORS) group in the setting of 2 programs: a first-episode psychosis program and a clubhouse for individuals with serious mental illness. The experience of running these 2 DOORS groups resulted in 2 publicly available, free training manuals to empower others to run such groups and adapt them for local needs. Future work on DOORS will expand the curriculum to best support digital health needs and increase equity of access to and knowledge and skills related to technology use in serious mental illness.
    背景与目标: : 智能手机等数字健康技术具有增加获得护理和按需服务的潜力。但是,许多患有严重精神疾病 (例如精神分裂症) 的患者尚未获得充分利用这些创新方法所必需的数字健康培训。为了弥合知识和技能上的数字鸿沟,我们创建了一个基于自决理论,技术用例和治疗联盟的动手和交互式培训计划。本文介绍了在2个程序的设置中运行康复服务 (DOORS) 组结果数字机会的需求,理论基础和经验: 第一集精神病程序和针对严重精神疾病患者的会所。运营这两个DOORS小组的经验产生了两本公开提供的免费培训手册,以使其他人能够运营此类小组并使其适应当地需求。未来的DOORS工作将扩大课程范围,以最好地支持数字健康需求,并增加与严重精神疾病中技术使用相关的获取以及知识和技能的公平性。
  • 【急诊科的护士-医师团队合作: 对工作环境,自主权和对实践的控制的影响。】 复制标题 收藏 收藏
    DOI:10.1097/NNA.0b013e318283dc23 复制DOI
    作者列表:Ajeigbe DO,McNeese-Smith D,Leach LS,Phillips LR
    BACKGROUND & AIMS: BACKGROUND:Teamwork is essential to safety. Few studies focus on teamwork between nurses and physicians in emergency departments (EDs). OBJECTIVE:The aim of this study was to examine differences between staff in the interventional group EDs (IGEDs) and control group EDs (CGEDs) on perception of job environment, autonomy, and control over practice. METHODOLOGY:This was a comparative cross-sectional study of the impact of teamwork on perceptions of job environment, autonomy, and control over practice by registered nurses and physicians (MDs) in EDs. RESULTS:Staff in the IGEDs showed significant differences compared with staff who worked in the CGEDs on staff perception of job environment, autonomy, and control over practice. CONCLUSION:Active teamwork practice was associated with increased perceptions of a positive job environment, autonomy, and control over practice of both nurses and physicians.
    背景与目标:
  • 12 Towards a more enlightened view of autonomy. 复制标题 收藏 收藏

    【走向更开明的自治观点。】 复制标题 收藏 收藏
    DOI: 复制DOI
    作者列表:Hassed C
    BACKGROUND & AIMS: -2
    背景与目标: -2
  • 【(调整后) 对社会支持人群参与和自主问卷的影响的效度和可靠性。】 复制标题 收藏 收藏
    DOI:10.1186/s12955-019-1106-0 复制DOI
    作者列表:Berenschot L,Grift Y
    BACKGROUND & AIMS: BACKGROUND:Decentralisation of social support and budget cuts spurred interest in outcome-oriented payment systems in the Netherlands. Hence, measurement of relevant outcomes, such as self-reliance and participation, is needed. The Impact on Participation and Autonomy (IPA) questionnaire for rehabilitation clients was adapted for social support, called IPA-MO, and its validity and reliability were tested among social support clients in eight municipalities in 2014 and 2016. METHODS:The total research sample comprised of 4120 persons. Homogeneous subgroups were distinguished based on 1) disability and 2) age. Exploratory factor analysis (PCF) was used to identify domains for IPA-MO. Model fit was assessed with Confirmatory Factor Analysis (CFA) using structural equation modelling. RESULTS:PCF revealed that the IPA-MO model consists of all five original IPA domains: Autonomy indoors, Family role, Autonomy outdoors, Social life and relations, and Work and education. As a result of new items added, a new, sixth domain was developed: Financial autonomy. Due to high non-response on Work & education, construct validity was first tested for a five-domain IPA-MO model. The composition of the IPA-MO domains showed slight differences: the item on 'mobility indoor' shifted from Autonomy indoors (IPA) to Family Role in IPA-MO. The item on reciprocity shifted from Social Life and relations (IPA) to Autonomy outdoors (IPA-MO). Internal reliability was confirmed for all domains (Cronbach's alpha >.80). CFA showed acceptable construct validity of the five-domain IPA-MO model for the social support population (CFI .936, TLI .925, SRMR .051), all age groups and most disability-based groups. Construct validity including Work & education was tested for 234 participants. Then, PCF revealed six domains and the model fit was acceptable (CFI .915, TLI .903, SRMR .067). CONCLUSIONS:IPA-MO is a valid and reliable instrument to assess outcomes of social support. Further research on the domain Financial autonomy is needed. Social-support clients are numerous and dispersed and, in spite of the best intentions, hard to involve widely in policy processes. A valid outcome measure offers municipalities possibilities to gain insight in social costs and benefits of new policies. Outcome measurement also allows to contract bundled-services of providers, thereby changing the incentives for providers from increasing production to much needed innovation. Taking the perceptions of autonomy and participation of social-support clients as the acid test for the effectiveness of social support policies, may prove a serious game-changer in politics.
    背景与目标:
  • 【不知道的权利: 一种基于自治的方法。】 复制标题 收藏 收藏
    DOI:10.1136/jme.2002.001578 复制DOI
    作者列表:Andorno R
    BACKGROUND & AIMS: :The emerging international biomedical law tends to recognise the right not to know one's genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient's autonomy, with doctors' duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to the patient's relatives who, without that vital information, could be deprived of preventive or therapeutic measures. This paper argues, firstly, that individuals may have a legitimate interest in not knowing their genetic make up to avoid serious psychological consequences; secondly, that this interest, far from being contrary to autonomy, may constitute an enhancement of autonomy; thirdly, that the right not to know cannot be presumed, but must be "activated" by the individual's explicit choice, and fourthly, that this is not an absolute right, in the sense that it may be restricted when disclosure to the patient is necessary in order to avoid a risk of serious harm to third persons.
    背景与目标: : 新兴的国际生物医学法倾向于承认不知道自己遗传状况的权利。但是,在国内法中,行使这项权利的基础和条件仍然不清楚。除此之外,这种权利在理论层面上被批评为与患者的自主权,医生告知患者的义务以及与家人的团结相矛盾。这种情况尤其发生在不公开对患者亲属造成严重伤害的风险时,如果没有这些重要信息,可能会被剥夺预防或治疗措施。本文认为,第一,个人可能有合法的利益,不知道自己的基因构成,以避免严重的心理后果; 第二,这种利益,远非与自主相反,可能构成自主的增强; 第三,不知道的权利不能被推定,但是必须由个人的明确选择来 “激活”,第四,这不是绝对的权利,因为当有必要向患者披露以避免对第三人造成严重伤害的风险时,它可能会受到限制。
  • 【在研究参与者的自主权和研究人员的诚信之间走钢丝: 在瑞士寻求安乐死的阿尔茨海默氏病研究参与者的案例研究。】 复制标题 收藏 收藏
    DOI:10.1177/1556264619853198 复制DOI
    作者列表:Portacolone E,Covinsky KE,Johnson JK,Rubinstein RL,Halpern J
    BACKGROUND & AIMS: :This article addresses ethical issues in the conduct of ethnographic research with vulnerable study participants, such as individuals with cognitive impairment. Seven ethical issues emerged from this case study, in which a participant diagnosed with Alzheimer's disease wished to pursue euthanasia in Switzerland: (a) How to protect the participant's autonomy while ensuring his decision had not resulted from untreated depression or modifiable social factors; (b) How to interpret self-harm; (c) How to protect the research team members' "mandated reporter" status; (d) How to counteract the attractive qualities of pro-euthanasia videos depicting an easy end to personal suffering; (e) How to find a better alternative to the common practice of reporting self-harm cases to Adult Protective Services and then removing these cases from studies; (f) How to leverage a participant's trust to address these issues; and (g) Whether researchers should do anything further to help address unmet needs in similar situations.
    背景与目标: : 本文针对弱势研究参与者 (例如患有认知障碍的人) 进行人种学研究时的道德问题。这个案例研究中出现了七个伦理问题,其中被诊断患有阿尔茨海默氏病的参与者希望在瑞士寻求安乐死 :( a) 如何保护参与者的自主权,同时确保他的决定不是由未经治疗的抑郁症或可改变的社会因素造成的; (b) 如何解释自我伤害; (c) 如何保护研究小组成员的 “法定记者” 身份; (d) 如何抵消有利于安乐死的视频的吸引力,这些视频描绘了轻松结束个人痛苦; (e) 如何找到一种更好的替代办法,即向成人保护机构报告自残案件,然后将这些案件从研究中删除; (f) 如何利用参与者的信任来解决这些问题; 以及 (g) 研究人员是否应该进一步采取任何措施来帮助解决类似情况下未满足的需求。

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