The right not to know: an autonomy based approach

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.     

精神分裂症患者知情权和选择权的分时分级应用研究

目的 探讨让住院精神分裂症患者享受知情权和选择权的最佳时机及不同时间让患者享受知情权和选择权的最佳程度.方法 把精神分裂症患者在住院过程中享受知情权和选择权的时间分为入院时,入院后1周、2周、3周和4周5个时间点(分时);再把让患者享受知情权和选择权的程度分为不知情、部分知情、知情3个等级(分级);观察不同时间点让患者享受相同程度知情权和选择权和同一时间让患者享受不同程度知情权和选择权,对患者病情(合作程度)的影响.结果 患者在入院时、入院后1周,让患者不知情、部分知情、知情,其住院合作率A0组63.64%、B0组45.45%、C0组32.73%,3组间差异有极显著性(χ2=21.30,P<0.01);A1组56.43%、B1组52.38%、C1组42.45%,3组间亦差异有显著性(χ2=6.18,P<0.05);PANSS、SI和MAOS量表的分值逐渐升高,差异有显著性(P<0.05或0.01);2周后让患者知情、部分知情、不知情,各组住院合作率接近, PANSS、SI和MAOS量表的分值亦较接近,差异无显著性(P>0.05).结论 可以根据患者病情和法定监护人要求,让患者在不同的时间(分时),享受不同程度(分级)的知情权和选择权;分时分级让患者享受知情权和选择权的方法,操作简单、灵活,适合我国国情,对实际临床工作具有更重要的实用价值和理论价值.     

医疗同意权主体合理性探究

医疗同意权是患者充分了解自己病情诊断以及可供选择的治疗方案信息后,作出接受治疗与否以及选择何种治疗方案的人格权利。患者医疗同意权作为患者的一项重要权利越来越受到关注。在借鉴、吸收学术界研究成果的基础上,对如何更好地维护患者的医疗同意权作了初步探讨。     

人类辅助生殖技术实施中关于患者近亲属知情权的伦理思考

在人类辅助生殖技术领域,知情权很特殊,患者的病情属于个人隐私,但由于生殖涉及夫妻双方和家庭,知情权有时与隐私权形成对立。患者是否能自愿选择向近亲属告知病情,也仍然受到了其在家庭中的地位、来自家庭和社会的各种压力的影响。从伦理角度而言,对病情的知情权和治疗措施的决定权应该是患者本人。患者近亲属应在保障社会公益性不受到损害,患者的个人利益得到保护的基础上享有知情权,临床医务工作者应协助患者自愿、选择不损害患者利益的内容对其亲属进行告知,从而取得患者近亲属的理解和支持,减轻其家庭压力,为患者治疗创造有利的条件。     

传统诊疗模式及思维惯性对住院病人医疗知情效果的制约及解决对策

设计并发放包括费用、诊疗方法、药品信息、手术麻醉及放射检查等五方面内容所组成的调查问卷500份，收回有效问卷223份。问卷调查显示：①51．7％的患者有获得知情权的要求并被实现；28．5％的患者有知情的要求，但因医方告知不到位而无法实现；②关于药品费用，知情率不及25％；关于四个诊疗环节细分项目，知情度为40％～65％；⑧就目前的告知方式和内容而言，其所产生的知情、理解、接受效果在75岁以下年龄段的中青年组和老年组间，没有显著差别（P〉0．05）。传统的三级查房诊疗模式及对知情权法律属性的过分强调所形成的思维惯性，是影响知情权实现不可忽略的因素。并就代理人、告知的法律惯性思维及传统诊疗模式等三个制约因素，从伦理学的角度进行了辨析。有患者参与的定期诊疗小组工作会议的形式，是解决信息由单向性传递向双向性互动，使知情权得以充分实现，医学伦理学理念得以体现的有效途径。     

The physician, the media, and the 'spectacular' case

Drawing on his experiences as a pioneer in performing artificial heart transplants for illustration, DeVries considers the dilemmas that the physician-researcher working on a "spectacular" medical case confronts in dealing with the news media. He discusses five major concerns: the patient's privacy; the effects of the media on the treatment of the patient; the integrity of the experiment; hospital disruptions; and the negative reactions of peers who perceive physician-researchers as self-aggrandizing. DeVries concludes that physician cooperation with the press is necessary and desirable, but that it should be based on the following principles: (1) concern for the patient and family is paramount, taking precedence over the public's right to know; (2) any information released must be accurate; and (3) advance preparation regarding the logistics of reporting the news quickly and accurately is essential.     

病案社会化利用存在问题—医护人员的实证调查

目的了解医护人员对病案社会化利用的了解程度,找出影响医护人员知情权的各种因素。方法利用自编调查问卷,采用分层抽样方法,在粤东地区抽选部分医院开展调查,采用对比分析、描述性分析方法,分析353份调查问卷。结果只有69.73%的医护人员了解与病案利用相关的法律问题,民营医院的医护人员掌握相关法律知识比公立医院的医护人员好。结论医护人员法律意识还比较淡薄,医院的运作机制和管理模式是影响医护人员了解和学习法律知识的客观原因。     

浅析医患关系中患者知情权问题

随着我国经济的发展,民众法制意识不断提高,患者对自身合法权益的维护也日益加强。为此,在诊疗活动中,医生要充分尊重患者的知情权,这是减少医患纠纷发生的重要因素。本文主要从患者知情权的问题上提出个人的观点,为完善相关的法律法规提出建议。     

“守经达权”思路下护理伦理的告知义务问题探析

在护理伦理领域,告知义务的道德要求表现为尊重病人的知情权,但对于一些心理承受能力差的患者,护理人员在履行告知义务时却要面临伦理困境。借鉴中国传统观念"守经达权"的思路,主张护理人员在履行告知义务时依循程序伦理选择应有的价值取向,同时采取变通的方式,根据实际价值需要决定是否向病人告知其真实病情以及告知的程度,从而使护理人员能够既坚守道义,又不失灵活。     

对烧伤患者创面处理知识的调查分析

目的:了解人们对烧伤创面处理的基本知识掌握情况,满足人们对烧伤创面正确处理知识的需要.方法:笔者参照相关资料自行设计问卷调查表,对在我院住院的部分患者进行烧伤创面处理知识的调查分析.结果:100例烧伤患者中58例了解创面处理方法,100例非烧伤患者中72例了解创面处理方法,烧伤及非烧伤患者均需求创面处理知识.结论:针对部分患者不能正确掌握烧伤创面处理方法及对创面处理知识的需求,加强对烧伤创面处理知识宣教,使人们掌握正确的处理方法.     

The right not to know: the case of psychiatric disorders

This paper will consider the right not to know in the context of psychiatric disorders. It will outline the arguments for and against acquiring knowledge about the results of genetic testing for conditions such as breast cancer and Huntington's disease, and examine whether similar considerations apply to disclosing to clients the results of genetic testing for psychiatric disorders such as depression and Alzheimer's disease. The right not to know will also be examined in the context of the diagnosis of psychiatric disorders that are associated with stigma or for which there is no effective treatment.     

中药保密品种管理制度初探

本文运用文献资料法,对我国中药保密品种目前发展状况进行介绍与分析,为我国制定中药保密品种的相关管理制度提供借鉴。目前我国中药保密品种的发展存在以下问题：中药保密政策与其他国家药品政策不兼容、中药保密品种很难进行二次研发、对包含中药保密品种配方产品的其他成分进行保密,侵犯公众知情权。我国中药保密政策应与国际药品政策接轨;我们应对中药保密品种进行专利保护,促进其二次研发,并且加强对中药保密品种的监管,保证消费者的知情权。     

高职院校学生艾滋病认知状况调查

目的了解高职院校大学生对艾滋病（AIDS）的认识、态度及个人信念,为学校开展艾滋病健康教育提供依据。方法随机抽取243名大学生进行问卷调查。结果高职院校大学生对艾滋病的知识性问题知晓率不高,有93.4%的学生知道艾滋病可以通过血液传播;对性传播、母婴传播也有正确认识。大部分学生对艾滋病有恐慌情绪,正确安全性观念的持有率较低。结论应结合大学生对艾滋病的认识情况及行为特点,有针对性地开展艾滋病健康教育。     

外科手术患者对手术知情同意书理解现状调查分析

目的通过问卷调查,分析手术知情同意书签署中存在的问题,为医务人员更好履行告知义务提供依据。方法对801例签署手术同意书患者进行调查,使用SPSS13．0软件,采用卡方检验的分析调查结果。结果调查对象对手术同意书内容理解方面,只有27．22％的患者或受托人能充分理解手术中存在的风险,39．58％的患者或受托人知道手术中风险的应对措施;调查对象对手术同意书法律地位的认识方面,28．96％的患者和受托人知晓患者和受托人签署的同意书法律效力相同。结论应加强法律法规知识培训,提高医师的沟通能力,充分尊重患者的知情同意权。     

知情同意在临床药学中的应用

知情同意有丰富的内涵,知情同意权是患者的一项基本权利。知情同意权是临床上处理医患关系的基本伦理准则和法律原则之一,包括知情权、选择权、拒绝权和同意权等四项内容。在签署医疗知情同意书时,适时给予患者情感上的关爱,重视患者心理需求,采取医学技术与人文关怀相结合的医疗活动,有助于在现代医学模式基础上构建和谐的医患关系。     

实施人性化服务，提高医学信息中心的服务质量

 

论文从建立完备的用户服务制度，建立信息中心和用户的互动管理机制，尊重用户的知情权，信守服务承诺，服务内容要多样化等九大方面详细地论述了信息中心如何实施人性化服务。

     

湖北省某三甲医院住院病人服务需求与满足状况调查

目的:探讨湖北省某三甲医院住院病人的服务需求与满足情况,为以患者需求为导向的服务提供依据。方法:选择湖北省某三甲医院105名患者进行问卷调查。结果:服务需求与年龄、婚姻、月家庭人均收入及平素身体健康状况有关(P<0.05),患者的需求与满足存在差距。住院病人对知情权、医疗安全及合理收费的需求排在前3位;住院环境、知情权及办理出入院流程的满足排在前3位。需求分值最高的子项目分别为知晓疾病预后、合理用药、一日清单、输液一针见血、病房有晾晒衣服处、饮食指导、告知需提供的证件及知晓科室的电话。结论:住院病人的需求率高于满足率。医院应以需求为导向,及时调整和充实服务内容,形成患者所需求的服务体系,满足住院患者的服务需求。     

食管吻合口瘘诊疗进展

食管吻合口瘘常导致严重的临床后果,诊断不及时和处理方式不当往往是主要原因。故明确其发生的影响因素进行预防,及早诊断并正确处理极其重要。对于存在不利因素的患者早期予以处理,可以降低吻合口瘘的发生率以及瘘发生后的病死率。现综合国内外文献,对食管吻合口瘘的影响因素、诊断、治疗及并发症等予以综述。     

Is there a right not to know one's sex? The ethics of 'gender verification' in women's sports competition

The paper discusses the current medical practice of 'gender verification' in sports from an ethical point of view. It takes the recent public discussion about 800 m runner Caster Semenya as a starting point. At the World Championships in Athletics 2009 in Berlin, Germany, Semenya was challenged by competitors as being a so called 'sex impostor'. A medical examination to verify her sex ensued. The author analyses whether athletes like Semenya could claim a right not to know that is generally acknowledged in human genetics and enforced by international and national genetic privacy laws. The relevance of this right for genetic diagnosis in sports is discussed. To this end, the interests of the athlete concerned and of third parties are balanced according to the expected benefits and harms.Harm is documented in a number of cases and includes unjustified disqualification, severe sex and gender identity crisis, demeaning reactions, social isolation, depression and suicide. Benefits are dubious as most cases of intersex are considered irrelevant for sports competition. It has to be concluded that the benefits to be gained from 'gender verification' in sports via genetic testing do not outweigh the grave individual disadvantages. The current practice of athletic associations to largely ignore the right of competitors not to know does not comply with prevailing ethical provisions on the protection of sensitive personal data. Therefore, genetic 'gender verification' in sports should be abolished.     

EBM in practice: paediatrics.

There is a substantial gap between what we "need to know" and what we "actually know" to practise evidence-based paediatrics. Good evidence from primary research studies about effective child healthcare strategies (for individuals or populations) for a broad range of important issues is lacking. Systematic reviews of existing good-quality research evidence, or evidence-based clinical practice guidelines relevant to child health, are often not readily available or accessible to practising clinicians. Recent initiatives to supply the information needs of paediatricians should lead to improvements in the availability, accessibility and applicability of the "evidence-base". These efforts need wider commitment and further resources. The gap between what we already "know" and what we "actually do" in daily practice is even wider. We need to improve our efforts to implement existing research knowledge, using strategies with demonstrated effectiveness, to promote the timely transfer of research evidence into actual practice. The health outcomes of these efforts need to be systematically evaluated.