基因检测应用的社会伦理问题

基因检测技术作为一种新的检测方法在基因诊断、治疗和预防及生物制药等领域展示了其广阔的应用前景。但伴随着其临床应用出现了一些社会伦理和法律等新问题。对基因检测中出现或有可能出现的伦理问题如个人心理负担、家庭关系、社会歧视等进行初步探讨，提出进行基因检测应遵循的一般伦理原则，特别提出了基因检测准入原则，为我国基因检测技术的应用与管理提供参考。     

医学遗传学检测临床应用及伦理研究综述

医学遗传学检测的伦理问题是生命科学领域十分关注且具有争议的问题之一。随着基因组学研究的快速发展,增加了基因检测用于临床事件进行疾病风险评估的可能性,尤其在精准医疗基因检测及预防检测等方面应用广泛。通过对基因检测临床应用现状及常见伦理问题进行综述,并对相应的伦理原则进行梳理,提出平等尊重、知情同意、隐私保护及不伤害伦理原则,旨在帮助医务工作者规范诊疗行为及增强基因检测伦理方面的意识,促进基因组学研究更好发展。     

直面消费者基因检测中获取基因数据的伦理研究

随着基因检测技术日渐成熟,测序成本下降,直面消费者基因检测出现依托网络平台的新兴商业模式。通过梳理该类型基因检测的流程和方法,发现获取基因数据是基因检测公司营利不可或缺的一环;通过辨析基因检测公司获取基因数据的实质伦理问题与程序伦理问题,以及知情同意存在的不充分、隐匿性与误导性问题,提出诚信原则、底线原则和最小风险原则,以保护消费者的正当权益,促进直面消费者基因检测的良性发展。     

人类基因编辑研究伦理审查工作对策探讨——基因编辑婴儿诞生在中国后的思考

剖析基因编辑婴儿事件中的法律与伦理问题,从刚性规制、伦理规范滞后、独立性、监管四方面反思基因编辑婴儿事件,并就完善人类基因编辑研究伦理审查工作的主题,从加强基因编辑研究伦理立法、基因编辑技术伦理规范建设、独立的伦理审查机制、全球监管等四个视角进行对策探讨。     

涉及基因信息检测的知情同意伦理审查注意事项研究进展

目的概述基因信息检测的知情同意的注意事项,为临床研究中涉及基因信息检测的知情同意的伦理审查提供参考。方法查阅国内外有关基因信息检测涉及知情同意的文献并进行综合分析。结果基因信息检测引发个体、家庭和社会层面的隐私问题,基因信息检测的不知情权已得到广泛认可。知情同意中采用告知后同意,不仅体现对个人人格尊严和自主权的尊重,也有利于基因资源的有效利用;应在法律上构建合理的程序性制度,保障同意的自愿性和真实性,并落实于具体操作上。在确立不知情权的基础上,我国法律也应禁止用人单位和保险公司对劳动者和被保险人提出的实施基因检测或提供基因信息,也要严格禁止检测婴幼儿不可治愈疾病的基因。结论在临床研究伦理审查中,当产生冲突时,需前瞻性设计知情同意以解决个人不知情权与自身健康利益的冲突问题,并应在立法上构建合理程序以保障告知后同意的落实。     

浅谈儿科见习中的伦理问题

临床见习引发的伦理和法律问题已成为社会关注的重要问题,本文就儿科临床见习中的伦理问题进行分析,并提出了儿科临床见习教学中伦理矛盾的解决方法。     

性病恐惧症诊治中的伦理问题

作为一种新的疾病，性病恐惧症在临床诊治过程中常常会出现一些医学伦理问题。本文论述了性病恐惧在临床诊治过程中的一些特点，目前存在的一些医学伦理学问题以及解决这些问题的伦理原则。     

从伦理与法律的关系探讨人类基因的法律保护

分析了基因专利的现状和在基因专利问题上存在的分歧,认为关于基因专利的分歧在根本上是伦理与法律的分歧.通过探讨伦理与法律的关系,揭示了赋予基因专利的现实法律原因和基因专利在伦理上的障碍,明确了解决基因专利的法律与伦理分歧的基本思路.在此基础上,提出了关于基因法律保护机制的新设想,认为应当在传统专利法的基础上,针对基因研究成果构建一个以优先开发权为基础的全新的保护机制.     

试述人类体细胞基因治疗的伦理问题

人体基因治疗(下称基因治疗)起步于本世纪80年代,在短短的十余年内就取得了令人瞩目的成就.有人预计,下一个世纪基因治疗将成为治疗疾病的主要手段之一.然而,所有全新的临床方法都伴随着伦理问题,基因治疗提出的伦理问题,是由于它与其它治疗方法截然不同,更多的因素是其治疗的目的不能与优生学完全分离,因此基因治疗的生物伦理学成为当前医学、哲学、生物学、社会学、宗教界、立法者、决策者和公众所关心的重要问题.1.基因治疗是指对导致疾病之异常基因的结构和功能进行修改,以达到控制和治疗疾病的目的.基因治疗有四种类型:体细胞基因治疗、生殖系基因治疗、增强基因工程和优生基因工程.现在一般认为,从伦理学角度,最好把基因治疗分成体细胞基因和幼体基因治疗(包括生殖基因细胞基因、增强和优生基因工程),前者仅对个人的基因缺陷进行校正,后者不仅影响个人而且影响其后代.虽然幼体基因治疗涉及的伦理问题更多,但现今只有体细胞的基因治疗被允许临床试验,所以体细胞的基因治疗伦理问题是最具现实意义的话题.     

一例慢性伤口不愈合患者拒绝住院治疗的伦理剖析

介绍专科护士在为慢性伤口不愈合患者制定治疗护理计划中出现有利原则与尊重原则伦理冲突的个案,运用广州医科大学附属第三医院设计的《临床护理伦理结构化分析表格》进行伦理分析和伦理决策,并解决复杂护理病例的临床护理伦理难题。实践表明,护士在为患者制定护理治疗计划出现伦理冲突的境遇下,运用临床护理结构化伦理分析有助于提升护士的伦理决策能力,强化伦理思维。建议在临床护理中强化护士的伦理思维,不断提升护士伦理决策能力,并培育科学与人文相融的核心护理技术,提升护理价值。     

Ethics in the laboratory examination of patients

Various value problems are connected with the clinical examination of patients. The purpose of this literature review is to clarify: 1) in which patient examinations ethical problems are generally found; 2) what kind of ethical problems are found in the different phases of the examination process, and 3) what kind of ethical problems are found in connection with the use of examination results. Genetic testing, autopsy, prenatal and HIV examinations were ethically the most problematic laboratory examinations. The most problematic phase in the laboratory examination process proved to be the pre-analytic phase. At present the results of laboratory examination are used more and more often for the prediction of diseases. The problems appear when the examination results are used for discrimination and stigmatization. Because of the lack of empirical ethical research, it is important to chart empirical knowledge about present value conflict situations involved in the laboratory examination process.     

National symposium on problems of presymptomatic testing for Huntington's disease, Cardiff.

Presymptomatic testing for Huntington's disease has given rise to several ethical problems relating to such issues as confidentiality, the privacy of the individual, the testing of minors and informed consent in connection with blood sample donation. A multidisciplinary conference of staff from genetic centres involved with presymptomatic testing was organised in Cardiff to discuss these and other problems. Recommendations on good practice are described under four headings: pre- and post-test counselling; confidentiality in relation to test results; collection and storage of DNA, and criteria for testing.     

Ethical issues in preconception genetic carrier screening

Population-based preconception genetic carrier screening programmes (PCS) with expanded panels are currently being developed in the Netherlands. This form of genetic screening for recessive traits differs from other forms of genetic testing and screening in that it is offered to persons not known to have an increased risk of being carriers of genetic traits for severe recessive diseases and in that they include tests for a large number of traits, potentially several hundred. This raises several ethical issues around justice, consequences, and autonomy. It will be argued that most of these ethical problems call for cautious reflection when setting up PCS and similar programmes within preconception care. It is moreover argued that it is ethically problematic to have an official aim and failing to mention possibly legitimate public aims that actually drive the development of PCS.     

Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information

Using data obtained during a retrospective interview study of 30 women who had undergone genetic testing-BRCA1/2 mutation searching-this paper describes how women, previously diagnosed with breast/ovarian cancer, perceive their role in generating genetic information about themselves and their families. It observes that when describing their motivations for undergoing DNA testing and their experiences of disclosing genetic information within the family these women provide care based ethical justifications for their actions. Finally, it argues that generating genetic information and disclosing this information to kin raise different types of ethical issues. The implications of these findings for ethical debates about informed choice in the context of genetic testing are discussed.     

“网络社会”的伦理问题及其对医德的影响

本文认为“网络社会”的伦理道德问题是由“网络社会”自身的特点决策的，网络社会所涉及的伦理问题主要有：在道德意识方面，伦理相对主义有重新泛滥的倾向，在道德规范方面，传统的道德规范受到严重挑战，在道德行为方面，各种道德规范现象屡见不鲜，这些伦理问题也冲击到了现实社会中的医德医风，对此，文章提出了开展网络道德教育，制定系统的网络行为规范，构建医德教育的新体系等对策。     

Ethical boundaries in genetic testing.

The scarcity of resources that can be allocated to genetic testing will ultimately limit the number of diseases subjected to molecular analysis. Medical student David Allan, who claimed first prize in CMAJ's 1995 Logie Medical Ethics Essay Contest, looks at the ethical principles that should guide decisions about genetic testing, and the importance of communicating these principles to patients and their families.     

浅析人类生殖细胞基因治疗的伦理学问题及对策

人类生殖细胞基因治疗是一个全新的医学领域,它可以从根本上治疗许多疾病,但是由于技术不完善以及存在众多伦理问题,所以该技术未能广泛应用于临床治疗和研究.人类生殖细胞基因治疗引发的伦理问题有：科学不可预知性的问题;生殖细胞基因治疗的社会风险问题;生殖细胞基因治疗改变人类多样性的问题;生殖细胞基因治疗的人权问题;如何判断基因“好”与“坏”的问题;生殖细胞基因治疗的经济价值问题.避免这些问题的对策有：政府应建立有效的管理和法律制度;生殖细胞治疗基因应符合国际技术规范和伦理规范;科学家和医学工作者应该加强道德修养,掌握应有的伦理学知识;加强教育宣传工作,使公众了解并接受该治疗方法.     

Thresholds of Coercion in Genetic Testing

One moot point in bioethical debates about genetic testing concerns the conditions that have to be fulfilled to make individual genetic testing or individual participation in genetic screening programs truly voluntary. Though there is a relatively broad consensus about the non-viability of views on the extremes of the spectrum of opinions, there is considerable disagreement in the middle. This mirrors the difficulties in defining satisfactory demarcation lines between autonomous choice, pressured choice and coercion in cases in which the decision to participate is triggered, wholly or partly, by factors such as material incentives, urgent health needs, massive social expectations, or moral pressure from relatives. In this contribution, some of the semantic conditions and ethical principles concerning coercion are explored with a view to applying them to genetic testing, especially in the context of insurance and participation in clinical trials.     

Predictive Genetic Testing, Autonomy and Responsibility for Future Health

Individual autonomy is a concept highly appreciated in modern Western societies. Its significance is reflected by the central importance and broad use of the model of informed consent in all fields of medicine. In predictive genetic testing, individual autonomy gains particular importance, for what is in focus here is not so much a concrete medical treatment but rather options for taking preventive measures and the influence that the test results have on long-term lifestyle and preferences. Based on an analysis of autonomy-related issues in predictive genetic diagnosis and genetic screening programmes, this contribution stresses the central relevance of a broad notion of autonomy for the discussion of ethical issues raised in connection with predictive genetic testing and genetic screening programmes. Only against the background of such a broad notion of autonomy, which stresses not only free and informed decision-making but also the relevance of long-term prospects for leading a self-determined life in familial and social contexts, can the manifold autonomy-related issues linked to predictive genetic testing be given adequate consideration.