Genetic testing and its implications: human genetics researchers grapple with ethical issues.

To better understand ethical issues involved in the field of human genetics and promote debate within the scientific community, the author surveyed scientists who engage in human genetics research about the pros, cons, and ethical implications of genetic testing. This study contributes systematic data on attitudes of scientific experts. The survey finds respondents are highly supportive of voluntary testing and the right to know one's genetic heritage. The majority consider in utero testing and consequent pregnancy termination acceptable for cases involving likelihood of serious disease but disapprove for genetic reasons they consider arbitrary, leaving a gray area of distinguishing between treatment of disorders and enhancement still to be resolved. While safeguarding patient confidentiality versus protecting at-risk third parties (kin, reproductive partners) presents a dilemma, preserving privacy from misuse by institutional third parties (employers, insurers) garners strong consensus for legislation against discrimination. Finally, a call is made for greater genetic literacy.     

Societal and ethical issues of digitization

In this paper we discuss the social and ethical issues that arise as a result of digitization based on six dominant technologies: Internet of Things, robotics, biometrics, persuasive technology, virtual & augmented reality, and digital platforms. We highlight the many developments in the digitizing society that appear to be at odds with six recurring themes revealing from our analysis of the scientific literature on the dominant technologies: privacy, autonomy, security, human dignity, justice, and balance of power. This study shows that the new wave of digitization is putting pressure on these public values. In order to effectively shape the digital society in a socially and ethically responsible way, stakeholders need to have a clear understanding of what such issues might be. Supervision has been developed the most in the areas of privacy and data protection. For other ethical issues concerning digitization such as discrimination, autonomy, human dignity and unequal balance of power, the supervision is not as well organized.     

生命科学研究中的伦理道德问题

一、生命科学及其生命科学伦理道德生命科学是研究生命活动现象、规律及其本质的科学。从产生至今,对人类社会的推动和对人类生活的影响,达到了前人无法想象的地步。与历史上任何一次重大的科技进步都引起了伦理学的热情关注一样,生命科学的发     

Granny and the robots: ethical issues in robot care for the elderly

The growing proportion of elderly people in society, together with recent advances in robotics, makes the use of robots in elder care increasingly likely. We outline developments in the areas of robot applications for assisting the elderly and their carers, for monitoring their health and safety, and for providing them with companionship. Despite the possible benefits, we raise and discuss six main ethical concerns associated with: (1) the potential reduction in the amount of human contact; (2) an increase in the feelings of objectification and loss of control; (3) a loss of privacy; (4) a loss of personal liberty; (5) deception and infantilisation; (6) the circumstances in which elderly people should be allowed to control robots. We conclude by balancing the care benefits against the ethical costs. If introduced with foresight and careful guidelines, robots and robotic technology could improve the lives of the elderly, reducing their dependence, and creating more opportunities for social interaction     

Direct-to-consumer genetic testing in Slovenia: availability,ethical dilemmas and legislation

Introduction

Over the last few years, many private companies are advertising direct-to-consumer genetic testing (DTC GT), mostly with no or only minor clinical utility and validity of tests and without genetic counselling. International professional community does not approve provision of DTC GT and situation in some EU countries has been analysed already. The aim of our study was to analyse current situation in the field of DTC GT in Slovenia and related legal and ethical issues.

Materials and methods

Information was retrieved through internet search, performed independently by two authors, structured according to individual private company and the types of offered genetic testing.

Results

Five private companies and three Health Insurance Companies offer DTC GT and it is provided without genetic counselling. Available tests include testing for breast cancer, tests with other health-related information (complex diseases, drug responses) and other tests (nutrigenetic, ancestry, paternity). National legislation is currently being developed and Council of Experts in Medical Genetics has issued an opinion about Genetic Testing and Commercialization of Genetic Tests in Slovenia.

Conclusions

Despite the fact that Slovenia has signed the Additional protocol to the convention on human rights and biomedicine, concerning genetic testing for health purposes, DTC GT in Slovenia is present and against all international recommendations. There is lack of or no medical supervision, clinical validity and utility of tests and inappropriate genetic testing of minors is available. There is urgent need for regulation of ethical, legal, and social aspects. National legislation on DTC GT is being prepared.Key words: Direct-to-consumer genetic testing, DTC, ethics in genetics, legislation     

Ethical frontiers of ICT and older users: cultural, pragmatic and ethical issues

The reality of an ageing Europe has called attention to the importance of e-inclusion for a growing population of senior citizens. For some, this may mean closing the digital divide by providing access and support to technologies that increase citizen participation; for others, e-inclusion means access to assistive technologies to facilitate and extend their living independently. These initiatives address a social need and provide economic opportunities for European industry. While undoubtedly desirable, and supported by European Union initiatives, several cultural assumptions or issues related to the initiatives could benefit from fuller examination, as could their practical and ethical implications. This paper begins to consider these theoretical and practical concerns. The first part of the paper examines cultural issues and assumptions relevant to adopting e-technologies, and the ethical principles applied to them. These include (1) the persistence of ageism, even in e-inclusion; (2) different approaches to, and implications of independent living; and (3) the values associated with different ethical principles, given their implications for accountability to older users. The paper then discusses practical issues and ethical concerns that have been raised by the use of smart home and monitoring technologies with older persons. Understanding these assumptions and their implications will allow for more informed choices in promoting ethical application of e-solutions for older persons.     

Mainstreaming the e-excluded in Europe: strategies,good practices and some ethical issues

E-inclusion is getting a lot of attention in Europe these days. The European Commission and EU Member States have initiated e-inclusion strategies aimed at reaching out to the e-excluded and bringing them into the mainstream of society and the economy. The benefits of mainstreaming the excluded are numerous. Good practices play an important role in the strategies, and examples can be found in e-health, e-learning, e-government, e-inclusion and other e-domains. So laudable seems the rationale for e-inclusion, few have questioned the benefits. In fact, e-inclusion does raise ethical issues, and this paper discusses a few of the key ones. The paper draws several conclusions, principally regarding the need for some empirical research on what happens to the e-excluded once they have access to information and communications technologies, notably the Internet.     

National Systems of Entrepreneurship: Measurement issues and policy implications

We introduce a novel concept of National Systems of Entrepreneurship and provide an approach to characterizing them. National Systems of Entrepreneurship are fundamentally resource allocation systems that are driven by individual-level opportunity pursuit, through the creation of new ventures, with this activity and its outcomes regulated by country-specific institutional characteristics. In contrast with the institutional emphasis of the National Systems of Innovation frameworks, where institutions engender and regulate action, National Systems of Entrepreneurship are driven by individuals, with institutions regulating who acts and the outcomes of individual action. Building on these principles, we also introduce a novel index methodology to characterize National Systems of Entrepreneurship. The distinctive features of the methodology are: (1) systemic approach, which allows interactions between components of National Systems of Entrepreneurship; (2) the Penalty for Bottleneck feature, which identifies bottleneck factors that hold back system performance; (3) contextualization, which recognizes that national entrepreneurship processes are always embedded in a given country's institutional framework.     

The freedoms of software and its ethical uses

The “free” in “free software” refers to a cluster of four specific freedoms identified by the Free Software Definition. The first freedom, termed “Freedom Zero,” intends to protect the right of the user to deploy software in whatever fashion, towards whatever end, he or she sees fit. But software may be used to achieve ethically questionable ends. This highlights a tension in the provision of software freedoms: while the definition explicitly forbids direct restrictions on users’ freedoms, it does not address other means by which software may indirectly restrict freedoms. In particular, ethically-inflected debate has featured prominently in the discussion of restrictions on digital rights management and privacy-violating code in version 3 of the GPL (GPLv3). The discussion of this proposed language revealed the spectrum of ethical positions and valuations held by members of the free software community. In our analysis, we will provide arguments for upholding Freedom Zero; we embed the problem of possible uses of software in the broader context of the uses of scientific knowledge, and go on to argue that the provision of Freedom Zero mitigates against too great a moral burden—of anticipating possible uses of software—being placed on the programmer and that, most importantly, it facilitates deliberative discourse in the free software community.     

JDCS模型的修正及其在高校科研人员中的应用

JDCS模型是工作压力研究中的一个经典模型。本文运用我国高校科研人员工作压力的问卷调查数据 ,对该模型进行了本土化修正 ,并对我国高校科研人员的工作压力现状进行了研究。研究结果显示 :我国高校科研人员的工作压力总体水平偏低 ;近 3 4的科研人员处于高社会支持水平 ;近八成科研人员处于低工作要求和高健康水平状态。     

The Nazi symbiosis: politics and human genetics at the Kaiser Wilhelm Institute

The case of the Kaiser Wilhelm Institute for Anthropology, Human Heredity and Eugenics (KWIA), from its inception in Weimar Republic Germany to its apogee under the rule of the Third Reich, is an example of how politics and human heredity can function as mutually beneficial resources. Whether it was a result of the Nazi bureaucrats' desire to legitimize their racial policy through science, or the KWIA personnel's desire to secure more funding for their research, the symbiotic relationship that developed between human genetics and Nazi politics could help explain why many scientists in the Third Reich undertook research projects that wholly transgressed the boundaries of morally acceptable science.     

评价交叉科学研究人员的新思路

在当前利用科学计量学工具对研究人员的科研评价中,由于采用的基本是一种基于学科分类的评价方法,这使得交叉科学研究人员处于相对不利的地位。本文以交叉科学研究人员代表钱学森为典型案例,将其与专业领域作者的被引指标进行比较。为解决这一问题,文章最后提出了新的"学科扩散因子"的指标。     

中国光学论文发表现状及对中国光学期刊的启示

【目的】调研中国近5年来的光学论文发表情况,为光学学科与光学期刊的发展和创新提供参考。【方法】 基于Web of Science数据库, 对2011—2015年间中国在SCIE光学类期刊上发表的论文进行分析。【结果】 5年间中国作者在90种SCIE光学类期刊上发表了37371篇文章,总被引161069次,篇均被引4.31次。中国作者的文章发表数量逐年上升;中国与全球主要发达国家在光学领域均有合作研究;中国研究机构在光学多个分支领域发展活跃。【结论】 提升我国已有英文光学期刊的质量、创办细分学科方向的新期刊、培养光学领域年青学者可以促进我国光学期刊的发展。     

科研人员省际流动网络分析及演化过程研究

   本文基于“科学家在线”平台数据,运用复杂网络分析方法,按照年份分别构建2010—2017年间全国34个省份之间科研人员流动网络模型,测度并分析8年间科研人员流动的复杂性网络整体特征和随时间变化的趋势。研究发现：（1）8年间科研人员流动呈现整体较为明显的“无标度”特性,即北京、上海、江苏等经济科技发达地区不仅流入科研人员的规模较大,流出科研人员的规模也不小,但是全国大部分省份流动科研人员规模较为有限;（2）除了小部分省份之外其余省份的人员流入流出相对较为均衡,一些经济科技发达省份在一定程度上也是全国或本区域科研人员流动的中心节点;（3）从发展态势来看,8年间全国省级科技人员流动态势相对平稳,但是省份之间科研人员流动规模差距越来越明显,经济科技发达省份与其他省份科研人员流动的规模相比差距越来越大;（4）最为突出的变化是流动人员规模显著增加,人员流动更加便利。     

The ethical use of artificial intelligence in human resource management: a decision-making framework

Ethics and Information Technology - Artificial intelligence (AI) is increasingly inputting into various human resource management (HRM) functions, such as sourcing job applicants and selecting...     

Information requirements of cancer center researchers focusing on human biological samples and associated data

This study was undertaken to characterize the information requirements of cancer researchers who were specifically interested in human biological specimens at a comprehensive cancer center, and to determine if existing information systems could meet those needs. Information required by the cancer center researchers at the University of Pittsburgh Cancer Institute (UPCI, Pittsburgh, PA) was identified through interviews, query analysis, and analysis of publications. For topical matters, the study found that the most frequent types of questions were the following: clinical (50.18%), prognosis (17.87%), diagnosis/disorder-based (50.72%), and research-oriented (51.9%) queries. In terms of the required data elements, pathology data (17.32%) was the most frequently required, followed by clinical history and outcomes (15.18%). In addition, the study identified the 10 main questions, concerning human biological samples, and the majority of the questions were represented in a fairly discrete set of information spaces that could be well mapped into the conceptual data model created through the study. The results found in this study can be used for an initial data modeling, when creating a biomedical research data warehouse that would support the majority of the transitional research requirements of the UPCI.     

关于公共科技及其管理的几个问题

公共科技管理学是研究公共科技形态、规律与管理的科学。本文简要概述了公共科技产品的类型和特征,回顾了我国公共科技的发展历程,重点探讨了公共科技研究活动的运行机制,公共科技活动的主体以及政府在公共科技发展过程中起的作用。本文认为加强公共科技管理是提高我国自主创新能力的需求。     

板内造山作用与成矿

中国大陆广泛分布强烈的板内变形和造山作用，传统的板块构造理论常常将其解释为板块边缘汇聚力的远程效应。然而，中国大陆的板内造山作用与汇聚板块边界之间缺乏可预期的动力学联系，不能简单地解释为大陆碰撞或板块俯冲的远程效应。本文提出另一种可供选择的解释，认为板内变形主要取决于岩石圈不均一性。相邻的板块拼合在一起形成统一板块之后，区域地质演化进入板内阶段。板块碰撞导致的岩石圈不均一性和重力不稳定性可以触发强烈的板内变形甚至造山作用，其延迟时间的长短取决于岩石圈不稳定性的程度和地球深部的热扰动。与板缘造山带相比，板内造山作用缺少板块俯冲．碰撞过程，板内造山带的演化历史相对简单，通常是以岩石圈拆沉作用开始，以地壳的垂向增生为特征，最后以岩石圈拆沉作用结束或形成重力不稳定岩石圈。因此，板内造山作用一般沿着古造山带发育。古造山带岩石圈结构低成熟度的特点不仅是岩石圈不稳定性的主要原因之一，而且由于挥发分和含矿元素的富集在活化过程中具有很强的成矿潜力。板内造山带的成矿作用依赖于深埋在岩石圈-软流圈系统不同深度水平上含矿流体的突然释放，主要发生在造山作用初始阶段和造山后伸展阶段。