The Principles and Ethics of Including Children with Disability in Child Research

This paper provides a set of principles and ethics, developed in collaboration between Pacific‐ and Australian‐based researchers, to guide research practice in a project enabling the self‐reporting of children with disability in Vanuatu and Papua New Guinea (PNG). The paper presents both a summary of academic literature relating to these principles and ethics, as well as their succinct ‘translation’ into a set of action statements for researchers working with children with disability. The paper offers a base for further development by others to guide research practice and foster the autonomous participation of children with disability in developing countries.     

The Ethical Foundations of Risk Analysis

In the field of risk analysis, the normative value systems underlying accepted methodology are rarely explicitly discussed. This perspective provides a critique of the various ethical frameworks that can be used in risk assessments and risk management decisions. The goal is to acknowledge philosophical weaknesses that should be considered and communicated in order to improve the public acceptance of the work of risk analysts.     

The significance of meaning. Why IPBES needs the social sciences and humanities

The term “biodiversity” is often used to describe phenomena of nature, which can be studied without a reference to the socially constructed, evaluative, or indeed normative contexts. In our paper, we challenge this conception by focusing particularly on methodological aspects of biodiversity research. We thereby engage with the idea of interdisciplinary biodiversity research as a scientific approach directed at the recognition and management of contemporary society in its ecological embedding. By doing this, we explore how research on and assessments of biodiversity can be enhanced if meaning, aspiration, desires, and related aspects of agency are methodically taken into account. In six sections, we substantiate our claim that the discourse on biodiversity (including the IPBES (Intergovernmental science-policy Platform on Biodiversity and Ecosystem Services) debate) is incomplete without contributions from the social sciences and humanities. In the introduction, a brief overview of biodiversity’s conceptual history is provided showing that “biodiversity” is a lexical invention intended to create a strong political momentum. However, that does not impede its usability as a research concept. Section 2 examines the origins of the Convention on Biological Diversity (CBD) by way of sociological discourse analysis. Subsequently, it proposes a matrix as a means to structure the ambiguities and tensions inherent in the CBD. The matrix reemphasizes our main thesis regarding the need to bring social and ethical expertise to the biodiversity discourse. In Section 3, we offer a brief sketch of the different methods of the natural and social sciences as well as ethics. This lays the groundwork for our Section 4, which explains and illustrates what social sciences and ethics can contribute to biodiversity research. Section 5 turns from research to politics and argues that biodiversity governance necessitates deliberative discourses in which participation of lay people plays an important role. Section 6 provides our conclusions.     

Ethical uneasiness and the need for open-ended reflexivity: the case of research into older people with a wish to die

This article focuses on research ethics in highly intimate research with possible impact on life and death. In order to stimulate an open-ended dialogue about research ethics, we reflect on four ethical challenges that came up during our research into older people with a wish to die. Drawing on our experiences, we discuss (1) the possibly confirming influence of our research on the death wish (moral experience of whether or not to disregard responsibility); (2) the suggested duty to intervene (moral experience of whether or not to compromise the person’s autonomy); (3) the researcher’s authority and power over the data (moral experience of threatening a person’s self-narrative) and (4) the dilemma of intimacy (moral experience of encountering the tragic). For guidance in addressing these challenges, we draw upon work on research ethics from phenomenological and care ethics scholars, as well as from those writing about relational ethics in health research. We suggest that being open about ethical uneasiness is important, because in most cases of a grey area, there are only open-ended answers needing an enquiring mind, rather than clear and fixed guidelines. Acknowledgement of ethical uneasiness and open-ended reflexivity are indispensable to constitute a morally good research practice.     

学术论文一稿多投的"诊"与"治"

一稿多投是学术界由来已久且难以医治的顽症。究其原因,主要是科研压力之下作者的投机心态、作者投稿经验的匮乏、稿件时效性的压力以及网上投稿的便捷与低成本等因素使然。一稿多投会造成编方人力资源的浪费,容易引发一稿多发,挤占宝贵的版面资源,引起版权纠纷,破坏学术诚信,扰乱科研秩序。要从加强制度建设、加大惩罚力度、利用高科技进行防范、健全监督机制、加强学术道德教育、提高编辑效率等方面,把"他律"与"自律"结合起来,惩防并举,标本兼治,多管齐下,齐抓共管,从根本上规范科研活动,根治一稿多投顽症。     

基因编辑技术背后的伦理与人权

当前基因编辑技术发展迅速,引起各国政府、学术界和企业界的广泛关注。但从近期“基因编辑婴儿”事件来看,基因编辑技术的伦理问题仍须厘清,我国现行法律尚不完善。通过保护基因编辑婴儿隐私、切实发挥伦理委员会作用、加快相关立法工作,我们或可更好地解决基因编辑技术背后的伦理和人权问题。     

基于系统动力学的“互联网+健康医疗”体系模型

“互联网+健康医疗”模式已然成为我国健康医疗产业发展的一个新方向,为解决传统医疗行业中存在的诸多问题提供了新思路。在分析“互联网+健康医疗”对传统医疗的影响及其发展机制的基础上,利用存量流量图等工具构建“互联网+健康医疗”体系模型,运用Vensim软件对我国“互联网+健康医疗”发展情况进行仿真,并模拟相关政策的干预效果。结果表明:“互联网+健康医疗”在降低潜在医疗需求(PMD)、促进分级诊疗中具有重要作用,保障医疗保险能够较好地嵌入“互联网+健康医疗”就诊流程中对降低PMD最有意义,而降低整体门诊价格对于优化就医结构、促进分级诊疗最为有效。     

谁的乡村建设？——基于乡村建筑变迁的观察和思考

在全面推进乡村振兴的大背景下，乡村建设正如火如荼地开展。其中，乡村建设中农民房屋建筑类型从特质性的“匠心独具”到同质性的“千村一面”，再到异化性的“自厝同异”变迁路径，反映出传统文化的保护危机，也深刻揭示出建筑变迁背后暗藏的农民与地方政府间的多元矛盾和博弈。此问题的根源在于农民主体性被消解，成了被建构的对象或客体，而地方政府却不断强化构建主体的身份认同。事实上，当前乡村建设呈现出五种不同的价值取向：一是为城市消费者休闲情趣的乡村建设；二是为城市中产阶级家乡情感的乡村建设；三是为地方政府凸显政绩的乡村建设；四是为开发商投资回报的乡村建设；五是为农民生存利益的乡村建设。不同参与者均带着不同的利益诉求介入乡村建设，直接影响到乡村建设的发展走向。因此，要处理乡村建设中的矛盾和问题，必须强化农民在乡村建设中的主体意识和主体身份，赋予农民对乡村建设事务的话语权与决定权。     

The Subpoena of Ethnographic Data

This essay outlines the author's experience of having his ethnographic data subpoenaed. It outlines the challenges of subpoena's to research, and suggests four solutions: (1) Apply for and utilize the National Institutes of Health certificate of confidentiality by asking health‐related questions over the course of one's research; (2) Establish a task force that articulates clear ethical guidelines for ethnographic research, with attention to the conditions wherein ethnographers can break confidentiality (and might also comply with subpoenas). These ethical guidelines should then be made clear to research subjects as a part of informed consent processes; (3) Demand that institutions (institutional review boards) that require confidentiality as a condition of research be required to defend that confidentiality through the office of the general counsel; (4) Socialize the cost of subpoenas, wherein scholars can be part of an insurance pool that will defend them in the event of a subpoena and thereby defend the general enterprise of ethnographic research.     

中国传统行政的善治理想及其现代影响——以黄宗羲为例

中国传统行政理论在长期发展中积累了丰富的内容,形成了完整的理论形态,并在明清之际达到了它近乎顶峰的极限状态,黄宗羲的善治理论就是它在这个阶段的重要代表。黄宗羲视域中的善治在内容及方式上,都延续了儒家传统主流观点。它在内容上首先要求圣王,即唯有圣王才能以“不忍人之心”行“不忍人之政”,所谓善治实际上就是“不忍人之政”;其次它还将善治的具体内容确定为养民与教民,“养民”就是使民足以事父母及畜妻子,养生送死无憾,“教民”就是用圣王学说教育民众,使民衣食住行都合乎礼;再次它还主张治理目的是使民皆“至于至善”和“止于至善”。中国传统行政理论的善治理想在现实中还有强劲的生命力,它既表现为行政的强烈伦理导向,又表现为一种主动作为的积极政府观,还表现为一种彻底的以人为本的人文主义。