科技伦理治理的法治化路径——以基因编辑技术的规制为例

基因编辑等新兴科技引发的科技伦理风险正在对一部分传统社会秩序予以解构和重塑,科技伦理治理是应对此种新型风险的时代范式。法治化为科技伦理治理提供了有效的制度保障,旨在推动其他社会规则向法律制度的转变,保障治理的规范性。法治化过程需要实现“伦理与法律”“创新与监管”之间的利益平衡。科技伦理治理的法治化强调对伦理问题的全过程治理,风险预防是主要目标,应当在治理前端构建伦理风险监测机制,在治理中端强化伦理审查与监管机制。科技伦理治理体系的完善是法治化的首要目标,制度供给是推进治理的核心路径,应当制定科技伦理基本法,加强科技重点领域的专项立法,并治理后端建构和落实相关的法律责任机制。     

社区角色伦理及其实现途径

从实践角度而言,社区角色伦理是指社区成员在角色扮演中,以与其身份地位相契合的权责定位、角色伦理期待和道德规范为主要内容的伦理行为模式.社区居民和社区组织作为两类主要社区角色,有着各自的角色权责定位、伦理期待和道德规范.面对社区建设中存在的种种问题,需要通过强化角色意识、明确角色责任、加强社区民主、健全组织保障等途径,促进社区角色伦理的实现.     

科技道德的两种精神

本文致力于挖掘各种科技道德规范背后的伦理精神 ,提出科学精神和人本精神是科技道德规范的灵魂 ;阐释两大精神的丰富内涵 ;辨析二者间的学理关系和实践关系。     

论西方马克思主义应用伦理及其基本特点

西方马克思主义应用伦理以对"科学技术合理性"问题的追问为逻辑起点,围绕科学技术与哲学、科学技术与生态、科学技术与消费关系的探讨,形成了系统的科技伦理、生态伦理和消费伦理。他们不同于一般应用伦理探讨现实问题应遵循的道德规范,而是立足于人的自由和解放这一本体论角度探讨上述问题,主要表现为一种伦理价值观,其应用伦理是其社会批判理论的内在组成部分。     

科技工作者角色道德意识及其培育

科技工作者的角色道德意识既是对其角色责任、伦理期待和道德规范认知的前提和基础,又是对科技行为进行伦理调控和道德人格塑造的内在动力.因此,在角色扮演过程中,科技工作者必须深刻理解和把握自己所扮演角色的伦理道德要求,形成对以权利和责任为核心的道德原则和道德规范的自觉意识.只有对自身角色的道德要求有明确认知与觉解,才能自觉按照与角色要求相适应的道德规范、道德原则进行道德实践,进而养成角色道德自觉.     

社会治理视阈下执政党角色伦理探析

执政党角色伦理是与党的性质和宗旨相契合的权责伦理定位、伦理期待和党员行为道德规范。党的性质、宗旨和多元社会治理理论以及解决社会治理主体不清的现实诉求,从理论和实践层面说明了我国执政党角色伦理社会治理的必要性与可能性。我国执政党角色伦理社会治理的权责定位是领导、服务和社会整合的枢纽;伦理期待的价值指向是全心全意为人民服务,行为要求是先锋模范的表率,实践标准是政治绩效,共产党员必须认同组织宗旨,坚守率先垂范、清正廉洁、一心为民、大公无私等道德规范。     

生存论向度的技术伦理前提及其建构

技术伦理涉及价值观基础、道德规范、技术主体的责任等诸多问题.无论是传统的元伦理学、情感主义伦理学、规范伦理学还是所谓的实用伦理学,都只是从某一个维度上或在某一个层面上来阐述伦理问题,从而在一定程度上表现为对于人的生存价值的背离和对发展合理性的伦理诉求的缺失,这样就使技术伦理研究本身在某种程度上失去了应有的合理性.在合理性上,技术伦理研究不能脱离开对技术本质属性的认识和基本的理论前提.从生存论的向度审视,生存价值才是伦理的内在价值基础,而发展的合理性才是技术伦理建构的基本逻辑支点.只有在此基础上,技术伦理才能实现合理的建构.     

“非常伦理”的道德内涵

“非常伦理”既与“应当做什么”和“应当如何做”的一般伦理问题相联系，也关乎“日常”与“非常”之辨。“非常伦理”和“日常伦理”都关涉伦理学的一般特点，包括德性与规范之间的统一。以“非常伦理”为关注之点，其意义不仅无法与一般的价值原则和普遍的道德规范相分离，而且涉及这些普遍原则的具体落实。在伦理学上，原则的普遍性和原则的落实，关乎形式与实质的关系问题。不管是日用常行，还是日常生活之外具有不确定性的生活领域，都需以普遍价值原则为引导。判断一种伦理原则的正当与否，不仅需要视其价值意义，而且应当同时关注其正面的价值意义是否得到具体落实。从行为过程和道德规范的互动来看，广义上的行为制约还关乎权力与权利之间的关系。不管是权力还是权利，都既与日用常行相关又超乎日用常行之外。以伦理学为视域，人类不仅需要约束权力，而且应当约束权利。在更广的意义上，“非常伦理”中的“非常”关乎科技领域，“非常伦理”则相应地需要讨论其中的伦理问题。科技活动既与人的日常存在相关，又不限于人的日用常行。通过对人体增强、人工智能的分析，可以更进一步理解“非常伦理”及其意义。     

科技——伦理的相契之维与生态发展

在科学、技术、生产一体化的时代,科技发展面临着自身无法应对的逻辑困境和发展困境,关注生活本身的相与的伦理之维为科技发展揖别上述困境提供了契机.正是在此机缘中,我们思入了科技伦理之所以成为时代问题的本质.切入科技伦理成为时代问题的维度,开启了我们进入科技伦理问题的生态视野,彰显出科技伦理的生态发展路向.科技和伦理在展现生活的意义和生命的价值的层面上相互关联,它们关联的生态视野开拓出科技发展揖别自身面临的各种困境的生态发展的路向.     

器官分配伦理

正国家、地区及其承担器官分配和移植的组织在进行人体器官资源分配时应遵循的道德规范。器官分配是器官供体资源配给政策、制度、方式、结果的总称。器官分配伦理所关注的是:器官优先分配给谁?谁有权力分配器官?按何种方式和原则分配器官?     

Genetic Counseling and the Ethical Issues Around Direct to Consumer Genetic Testing

Over the last several years, direct to consumer(DTC) genetic testing has received increasing attention in the public, healthcare and academic realms. DTC genetic testing companies face considerable criticism and scepticism,particularly from the medical and genetic counseling community. This raises the question of what specific aspects of DTC genetic testing provoke concerns, and conversely,promises, for genetic counselors. This paper addresses this question by exploring DTC genetic testing through an ethic allens. By considering the fundamental ethical approaches influencing genetic counseling (the ethic of care and principle-based ethics) we highlight the specific ethical concerns raised by DTC genetic testing companies. Ultimately,when considering the ethics of DTC testing in a genetic counseling context, we should think of it as a balancing act. We need careful and detailed consideration of the risks and troubling aspects of such testing, as well as the potentially beneficial direct and indirect impacts of the increased availability of DTC genetic testing. As a result it is essential that genetic counselors stay informed and involved in the ongoing debate about DTC genetic testing and DTC companies. Doing so will ensure that the ethical theories and principles fundamental to the profession of genetic counseling are promoted not just in traditional counseling sessions,but also on a broader level. Ultimately this will help ensure that the public enjoys the benefits of an increasingly genetic based healthcare system.     

Standards for the Reporting of Genetic Counseling Interventions in Research and Other Studies (GCIRS): an NSGC Task Force Report

As the demand for evidence to support the value of genetic counseling increases, it is critical that reporting of genetic counseling interventions in research and other types of studies (e.g. process improvement or service evaluation studies) adopt greater rigor. As in other areas of healthcare, the appraisal, synthesis, and translation of research findings into genetic counseling practice are likely to be improved if clear specifications of genetic counseling interventions are reported when studies involving genetic counseling are published. To help improve reporting practices, the National Society of Genetic Counselors (NSGC) convened a task force in 2015 to develop consensus standards for the reporting of genetic counseling interventions. Following review by the NSGC Board of Directors, the NSGC Practice Guidelines Committee and the editorial board of the Journal of Genetic Counseling, 23 items across 8 domains were proposed as standards for the reporting of genetic counseling interventions in the published literature (GCIRS: Genetic Counseling Intervention Reporting Standards). The authors recommend adoption of these standards by authors and journals when reporting studies involving genetic counseling interventions.     

Genetic Counseling Services and Development of Training Programs in Malaysia

Genetic counseling service is urgently required in developing countries. In Malaysia, the first medical genetic service was introduced in 1994 at one of the main teaching hospitals in Kuala Lumpur. Two decades later, the medical genetic services have improved with the availability of genetic counseling, genetic testing and diagnosis, for both paediatric conditions and adult-onset inherited conditions, at four main centers of medical genetic services in Malaysia. Prenatal diagnosis services and assisted reproductive technologies are available at tertiary centres and private medical facilities. Positive developments include governmental recognition of Clinical Genetics as a subspecialty, increased funding for genetics services, development of medical ethics guidelines, and establishment of support groups. However, the country lacked qualified genetic counselors. Proposals were presented to policy-makers to develop genetic counseling courses. Challenges encountered included limited resources and public awareness, ethical dilemmas such as religious and social issues and inadequate genetic health professionals especially genetic counselors.     

Defining Our Clinical Practice: The Identification of Genetic Counseling Outcomes Utilizing the Reciprocal Engagement Model

The need for evidence-based medicine, including comparative effectiveness studies and patient-centered outcomes research, has become a major healthcare focus. To date, a comprehensive list of genetic counseling outcomes, as espoused by genetic counselors, has not been established and thus, identification of outcomes unique to genetic counseling services has become a priority for the National Society of Genetic Counselors (NSGC). The purpose of this study was to take a critical first step at identifying a more comprehensive list of genetic counseling outcomes. This paper describes the results of a focus group study using the Reciprocal-Engagement Model (REM) as a framework to characterize patient-centered outcomes of genetic counseling clinical practice. Five focus groups were conducted with 27 peer nominated participants who were clinical genetic counselors, genetic counseling program directors, and/or outcomes researchers in genetic counseling. Members of each focus group were asked to identify genetic counseling outcomes for four to five of the 17 goals of the REM. A theory-driven, thematic analysis of focus group data yielded 194 genetic counseling outcomes across the 17 goals. Participants noted some concerns about how genetic counseling outcomes will be measured and evaluated given varying stakeholders and the long-term nature of genetic concerns. The present results provide a list of outcomes for use in future genetic counseling outcomes research and for empirically-supported clinical interventions.     

Iceland—Genetic Counseling Services

This brief report aims to give an overview of the history and current status of clinical genetics services in Iceland and specific genetic counseling considerations for Iceland’s population. Presently, there are two part time medical geneticists and one full time genetic counselor with an MSc education from Cardiff, within the Department of Genetic and Molecular Medicine, based in Iceland’s only tertiary healthcare facility, Landspitali, the National University Hospital. An oncologist (20 %) also contributes to the cancer genetic counseling service. In addition, a pediatric medical geneticist has a 25 % appointment at the Children’s Hospital. No other health care organization offers genetic counseling, and there are no private genetic counseling services.     

Genetic Counseling in the Era of Genomics: What’s all the Fuss about?

As genomic sequencing becomes more widely available in clinical settings for diagnostic purposes, a number of genetic counseling issues are gaining precedence. The ability to manage these issues will be paramount as genetic and non-genetic healthcare professionals navigate the complexities of using genomic technologies to facilitate diagnosis and inform patient management. Counseling issues arising when counseling for diagnostic genomic sequencing were identified by four genetic counselors with 10 years of collective experience providing genetic counseling in this setting. These issues were discussed and refined at a meeting of genetic counselors working in clinical genomics settings in Melbourne, Australia. Emerging counseling issues, or variations of established counseling issues, were identified from the issues raised. Illustrative cases were selected where pre- and post-test genetic counseling was provided in clinical settings to individuals who received singleton or trio WES with targeted analysis. Counseling issues discussed in this paper include a reappraisal of how genetic counselors manage hope in the genomic era, informed consent for secondary use of genomic data, clinical reanalysis of genomic data, unexpected or unsolicited secondary findings, and trio sequencing. The authors seek to contribute to the evolving understanding of genetic counseling for diagnostic genomic sequencing through considering the applicability of existing genetic counseling competencies to managing emerging counseling issues and discussing genetic counseling practice implications.     

Counseling Customers: Emerging Roles for Genetic Counselors in the Direct-to-Consumer Genetic Testing Market

Individuals now have access to an increasing number of internet resources offering personal genomics services. As the direct-to-consumer genetic testing (DTC GT) industry expands, critics have called for pre- and post-test genetic counseling to be included with the product. Several genetic testing companies offer genetic counseling. There has been no examination to date of this service provision, whether it meets critics’ concerns and implications it may have for the genetic counseling profession. Considering the increasing relevance of genetics in healthcare, the complexity of genetic information provided by DTC GT, the mediating role of the internet in counseling, and potential conflicts of interest, this is a topic which deserves further attention. In this paper we offer a discourse analysis of ways in which genetic counseling is represented on DTC GT websites, blogs and other online material. This analysis identified four types of genetic counseling represented on the websites: the integrated counseling product; discretionary counseling; independent counseling; and product advice. Genetic counselors are represented as having the following roles: genetics educator; mediator; lifestyle advisor; risk interpreter; and entrepreneur. We conclude that genetic counseling as represented on DTC GT websites demonstrates shifting professional roles and forms of expertise in genetic counseling. Genetic counselors are also playing an important part in how the genetic testing market is taking shape. Our analysis offers important and timely insights into recent developments in the genetic counseling profession, which have relevance for practitioners, researchers and policy makers concerned with the evolving field of personal genomics.     

Kitchener's Principle Ethics: Implications for Counseling Practice and Research

This extensive literature review examining the influence of K. S. Kitchener's (1984) introduction of principle ethics on counseling and psychology ethics notes the ultimate practicality of principle ethics. The authors maintain that although a strong influence of principle ethics in the area of counselor education emerges through the review, there is little clear evidence of influence in the areas of counseling research or practice. A primary reliance in the counseling professional literature on K. S. Kitchener's original work has likely resulted in a static understanding of the concepts and a concomitant theory–to–application knowledge gap. Implications include a more thorough and ongoing bridging between counseling ethics, philosophical ethics and practice, and a more overt presence of principle ethics.     

From Constraints to Opportunities? Provision of Psychosocial Support in Portuguese Oncogenetic Counseling Services

Although available guidelines for familial cancer risk counseling clearly state the need to provide adequate psychosocial assessments and support, this feature of care is only available in part for individuals and families in oncogenetic counseling protocols in Portugal. The purpose of this study was to examine the psychosocial aspects of oncogenetic counseling provided by a sample of Portuguese genetics professionals. We sought to ascertain perceived need for the provision of psychosocial services and ways to enhance the psychosocial focus in service delivery. A qualitative study was designed; semi-structured focus groups and individual interviews were performed with 30 professionals from Portuguese healthcare institutions where oncogenetic counseling is offered. Findings suggest: current practice is aligned with the teaching model, with a mainly information-based focus; use of psychosocial counseling techniques and psychosocial support is limited throughout the genetic counseling timeline; there is a limited workforce of adequately trained psychosocial professionals, who are disadvantaged by structural and organizational constraints. These factors are considered to be serious barriers for psychosocial delivery. Development of multidisciplinary teams working in oncogenetics, and need for further counselling skills and training for genetics healthcare professionals were identified as priorities. Implications for practice and policy are discussed. Portuguese genetic counselors who have recently completed their training, may therefore contribute to enhanced psychosocial services delivery.