Parents’ Communication with Siblings of Children Affected by an Inherited Genetic Condition

The objective of this study was to explore parents’ communication about risk with siblings of children affected by an inherited genetic condition, and to ascertain what level of support, if any, is required from health professionals. Semi-structured interviews were conducted with affected and unaffected children and their parents. Families were affected by one of six genetic conditions representing different patterns of inheritance and variations in age of onset, life expectancy and impact on families. Interviews were analysed using constructivist grounded theory and informed by models which focused on three different aspects of family communication. Interviews with 33 families showed that siblings’ information and support needs go largely unrecognized by health professionals and sometimes by parents. Some siblings were actively informed about the genetic condition by parents, others were left to find out and assimilate information by themselves. Siblings were given information about the current symptoms and management of the genetic condition but were less likely to know about its hereditary nature and their own potential risk. When siblings were fully informed about the condition and included in family discussion, they had a better understanding of their role within their family, and family relationships were reported to be more harmonious. The information and support needs of siblings can be overlooked. Parents with the responsibility for caring for a child affected by a genetic condition may require support from health professionals to understand and respond to their unaffected children’s need for more information about the genetic condition and its implications for the children’s own future health and reproductive decision-making.     

Gateways—just as important as standards: How the internet won the “religious war” over standards in Scandinavia

This article concerns the Nordunet project and its “plug.” It is a history about how the Internet “won” the “religious war” about computer communication protocol standards in Scandinavia. It teaches us important lessons about how the Nordic countries (except Denmark) became the leading ones in the adoption and use of the Internet. On a more general level this story also teaches us an important lesson about the importance of gateways in the design and establishment of large scale computer networks and information infrastructures. It is a universal truth that the development of such technologies requires standards. And that gateways are equally important. The main conclusion drawn is that what matters in the development of such technologies is to combine and balance the use of gateways and standards in a proper way. Originally trained as a computer scientist his research focuses mainly on the interplay between social and technical issues in the development and use of large-scale information systems and infrastructures—including their standards. He has worked most of his professional career within applied research institutions and industry and before moving into academia in 1997.     

Coming to terms: Using technology to know identity

Recent advances in information and communication technologies have led some cultural theorists to hypothesize that Western society is undergoing a dramatic change in ways of knowing one’s self and identity. Cases in point are those people who identify as “trans” (i.e., cross-dressers, transsexuals, transgendered persons). In the first half of the twentieth century, trans persons had very limited contact, if any, with others like themselves. The argument of cultural theorists is that increasingly sophisticated information and communication technologies have encouraged the development of trans communities across North America. An analysis of the narratives in an oral history project involving Toronto’s trans community largely supports the assertions of project involving Toronto’s trans community largely supports the assertions of cultural theorists. The majority of respondents felt communication technologies played a central role in their developing sense of gender. Communication technologies generally provided a sense of connection with others, alleviated the isolation and loneliness, and provided hope by showing that a trans person’s life was possible. However, many respondents also reported critical misgivings about communication technologies and their influence on trans subjectivities.     

Group Productivity and Telematic Communication

Abstract

Evidence offered by Bottger and Yetton has suggested that group performance is a function of member abilities and strategies to use them. This model completed previous ones offered by Steiner and Davis which were developed under the assumption that group communication occurs in a face-to-face situation. However, since the 1980s, a considerable amount of research has focused upon new ways of communication through new technologies. Findings from psychosocial studies suggest that the use of computers for communication changes group processes and outcomes. In this context, a new research question emerges, which is concerned with group performance as a function of the communication channel. New models should be developed for a better understanding of group performance in mediated communication context. This study presents results from a laboratory experiment comparing three communication media: face-to-face, electronic mail, and video-conference, in a multi-decision task (“moon survival”). Its main objective has been to replicate Bottger and Yetton's model but to incorporate the communication channel mentioned above as a moderator variable of group performance. Variables considered have been input variables (members' resources for achieving task); process variables (group composition according to consensus reached, adequate use of resources, and quality of conflict management), and group performance. Our results show the existence of different patterns for predicting group performance according to the communication channel employed. In this sense, in a face-to-face situation groups perform mainly on the basis of their members' knowledge of the task, as in Steiner's model. The performance of video-conference groups was due to the decision schemes, that is, how groups use their resources (the Davis model). Bottger and Yetton's model has been partially replicated in electronic mail situations. The management of the process is crucial for explaining group performance, but it may be necessary to code it in a different way. Therefore, the positive conflict management will be different from face-to-face and video-conference.     

The emergence of knowledge systems thinking: A changing perception of relationships among innovation,knowledge process and configuration

As agriculture develops, policy and management decisions increasingly focus on agricultural innovation emerging from utilizing knowledge and/or technology. This paper considers models for underpinning knowledge and technology policy and management. It describes the emergence of knowledge systems thinking. The system construct is applied to actors (individuals, networks and institutions) involved in knowledge processes. These actors potentially form a highly articulated and complex whole. Knowledge policy and management focus on measures that enhance the synergy between actors. Knowledge systems are viewed as “soft systems,” i.e., they only become systems as a result of active construction and joint learning. The soft systems perspective facilitates the identification of various knowledge system models, which have consequences for policy and management decisions with respect to investment, design, and training. In an attempt to create a unifying theory for these models, it is posited that these models are consistent combinations of innovation, knowledge process and structural configuration. Currently, he is the director of an international program on “Comparative research in knowledge systems in support of sustainable agriculture.”     

Shyness,sociability, and the role of media synchronicity in the use of computer‐mediated communication for interpersonal communication

This study analysed how university students in Hong Kong with varying degrees of shyness and sociability utilized computer‐mediated communication (CMC) technologies for interpersonal communication. As spontaneous communication can increase the workload on working memory and accentuate feelings of social anxiety, it was hypothesized that shy students were more likely to use email and social network sites (asynchronous CMC) more frequently, and instant messaging and chat less (synchronous CMC). Results from an online questionnaire provided partial support for the hypotheses and suggested distinctive usage patterns separated by media synchronicity. Moreover, the analyses revealed a significant interaction between shyness and sociability on asynchronous CMC use.     

互联网使用对共情的影响

随着信息技术的发展,互联网已成为当今社会人际交往的新平台。网络环境和现实环境不同,它具有匿名、便捷和易控制等特点。共情在人际交往中扮演重要的角色,它是指对他人情感的感同身受。互联网环境下共情的研究逐渐受到学者的重视。现有研究表明,不同的互联网使用对共情产生不同的影响:在线暴力视频游戏会降低共情,而在线亲社会视频游戏则对共情产生积极影响;网络社区的使用为网络中人们表露共情提供了重要平台;过度网络使用会对共情产生负面影响。但现有研究比较零散,还存在一些不足。未来要结合多种研究方法进行更多的应用研究,同时加强理论建构。     

Conflict of interest from a Romanian geneticist’s perspective

This paper examines Romanian bioethics regulations for biomedical sciences, looking in particular at the genetics area as a source for conflict of interest. The analysis is focused on the organizational level, national regulations, the sources for generating conflicts of interest, and management of conflicts. Modern biotechnology and gene technology are among the key technologies of the twenty-first century. The application of gene technology for medical and pharmaceutical purposes is widely accepted by society, but the same cannot be said of the development and application of gene technology in agriculture and food processing. Because the use of a technology in the production and processing of food is regarded more sceptically than in the production of biomedical products, there can be areas of conflict in many cases when communication is undertaken about gene technology in the agro-food sector. Ethical concerns play an important factor in this, but a society’s attitude to a developing technology is an amalgam of many effects which are beyond ethics as such. This paper contains a study carried out by the author for the Romanian Association for Consumer Protection about the attitudes of consumers towards genetically modified (GM) foods. This study revealed that in Romania more than 98% of consumers did not know anything about GM foods and frequently were confused about the definitions of these terms. In conclusion, it is necessary to say that there is a low level of knowledge regarding biotechnology in Romania and this is an important reason why there is neither public acceptance of gene technology products nor is there a rejection. An earlier version of this paper was presented at an International Conference on “Conflict of Interest and its Significance in Science and Medicine” held in Warsaw, Poland on 5–6 April, 2002. Ioana Ispas, MD in Molecular Biology, is a scientific researcher and Member of the Romanian Association for Consumer Protection, NCP for FP5-Quality of life and management of living resources.     

The Family Impact of Pain Scale: Preliminary Validation

A new questionnaire, the Family Impact of Pain Scale (FIPS), was designed in order to assess the effects of chronic pain on the significant other and family of the chronic pain patient. The FIPS is a 10-item self-report questionnaire examining the effect of pain on domestic duties, social functioning and communication within the family. It was administered to 177 chronic pain patients in two different samples to investigate its psychometric properties. Internal reliability (α = .94) and test–retest reliability (r = 0.79) were high. Exploratory factor analysis suggested a two-factor solution, relating to physical limitations and difficulties with communication. Construct validity was confirmed by significant Pearson correlations with pain intensity, pain distress, mood and the use of pain coping skills (r = −0.22–0.74, all at p < .05). Outcome data also showed that the measure is sensitive to the effects of a cognitive behavioural pain management intervention.     

Spiritual care as eHealth: a systematic review

A systematic review was undertaken of the literature on the use of the Internet and other information and communication technologies (ICT's) in the provision and support of religious and spiritual care in healthcare. Indexes such as Medline, PsychoINFO and Proquest Religion were searched. The review found little systematic study of the effectiveness of the Internet and other ICT's in religious and spiritual care. It is believed that the results of this review provide a basis for promise spiri care in the further explora of the potential and of ICT's for tual healthcare.     

COMMUNICATION DIVERSITY AND INFORMATION ACQUISITION AMONG KOREAN IMMIGRANTS IN HAWAII

The general purpose of the study was to construct a precise explanation of the communication patterns of Korean immigrants in Hawaii and the subsequent impact of these communication patterns on their level of information. A general pattern of communication diversity was conceptualized on two levels: (1) whether an immigrant uses diverse channels of communication rather than depending upon one dominant channel, and (2) whether his communication behavior cuts across ethnic boundaries rather than remaining restricted to just one ethnic group. It was hypothesized that for immigrants to be engaged in diverse communication patterns requires both a greater social capacity and a greater cognitive capacity. The cognitive structure with which immigrants process information from their new environment, and their perceived locus of control over the environment, were used as measures of cognitive capacity. Education, occupational status, length of residence in the United States, and English fluency were used as measures of social capacity. All of the hypothesized relationships were tested and supported by face-to-face interviews in a sample survey of 401 randomly selected Korean immigrants in Hawaii.     

What Facilitates or Impedes Family Communication Following Genetic Testing for Cancer Risk? A Systematic Review and Meta-Synthesis of Primary Qualitative Research

To systematically review and meta-synthesise primary qualitative research findings regarding family communication following genetic testing of cancer risk, in order to inform development of effective interventions. Systematic searches of CINAHL, Embase, Medline, British Nursing Index and PsycINFO databases were undertaken and relevant studies identified using strict criteria. The selected primary qualitative studies were appraised for quality and relevance by three independent researchers and then synthesized using a “Framework” approach. Fourteen (4.3%) studies met the inclusion criteria. The following factors influenced family communication following genetic testing for late-onset hereditary cancer: the informant’s feelings about informing relatives about genetic testing; the perceived relevance of the information to other family members and their anticipated reactions; the “closeness” of relationships within the family; family rules and patterns (e.g., who is best placed to share information with whom); finding the right time and level of disclosure; and the supportive role of heath care professionals. The themes identified in this review could provide practitioners with a useful framework for discussing family communication with those undergoing genetic testing. This framework focuses on helping health care professionals to facilitate family communication. The next step will be the development of an intervention to directly support people in talking to their relatives.     

Adaptations to the farm crisis: Macro level implications of micro level behaviors

Using panel data collected during a short term crisis period, the changes in household labor and finances of a random sample of North Carolina farm operations are examined. Most farms (63 percent) reported no changes in their labor allocation patterns or financial arrangements. Among farms that reported some type of change, postponing farm or household purchases, restructuring financial liabilities, and increasing family income were the most widely utilized adaptations. Variables measuring farm and household economic hardship discriminate the group that used any type of adaptation from the group that attempted no changes. Multinomial logistic regression was used to examine the effect of adaptation use on survival in agriculture. Farm operations that attempted any type of change in their use of labor and capital were the ones that ultimately did not survive in agriculture. The results point to the need to consider the linkage between macro level structural conditions and the micro level behavior of individuals and households in developing policy interventions to ameliorate economic hardship.     

A Formal Model for the Study of Communication Support Systems

The lack of conceptual frameworks available for integrating research on organizational computer-based communication technologies is documented. An integrated model for studying communication support phenomena in organizations is formalized from a knowledge management perspective using set-theoretic notation. Key constructs for understanding and exploring communication support systems are identified, such as knowledge workers, knowledge management activities, communicate-abilities, and knowledge management episodes. The implications associated with the identification and formalization of each of the foregoing constructs is discussed and further research avenues are explored. The model provides researchers and system developers with a means of studying both human and computer-based knowledge workers in organizations. Two types of communication support systems are defined.     

ICT4D: Internet Adoption and Usage among Rural Users in China

Despite its low penetration in the vast rural areas of China, the Internet is generally perceived as a new engine for rural empowerment and quite a number of experimental projects have been initiated in recent years to test this view. This study explores the effects of Internet use on various aspects of rural development, including economic conditions and education. A qualitative approach was adopted in order to gain an in-depth understanding of the diffusion process of the Internet and its implications for rural development. The data-collection methods included in-depth interviews, participant observations, and documentation reviews. The findings suggest that the rural areas included in the study have not witnessed dramatic social and economic changes resulting from the introduction of the Internet. Though the scope and depth of the changes are not significant enough to lend support to the romanticized arguments about information and communication technologies for development, the empirical findings show that the Internet has had some positive effects on the livelihood and education of the rural people. This study examines how social structures exert their influence on Internet diffusion, adoption, and use. The findings provide strong empirical evidence in support of the view that society shapes the adoption of technology. The Internet serves as an agent of change, but the extent, duration, and intensity of its impact are primarily determined by the existing socio-economic contexts of the rural settings.

Ethics of access: Globalization,feminism and information society

This article explores the ethics of access in relation to globalization, feminism and information society. It argues that the virtual settings of information and communication technologies (ICTs) are beginning to place significant emphasis on sociospatial as well as geospatial understandings of the world and the interactions that take place within it. The article examines the extreme material and other associated inequalities of contemporary globalization, and the concentration of technological development and power in the rich economies. Historical developments related to these factors are discussed, including the gendered nature of technologies and social processes shaping their production, application and use. It is argued that feminist theory and practice is relevant to broad debates about inequality of access in the information age, as well as to those concentrating specifically on gender and women. The tension between liberal/neoliberal focus on ‘equality’ and the ‘grotesque’ levels of contemporary inequality is raised. It is argued that feminism's long-standing and extensive critique of the problematic masculinist and partial nature of liberal/neoliberal theory, and its framing of agency, offers a major contribution in addressing this. Cyberfeminism works in theory and practice on horizontal networks and consciousness-raising about their potential, arguing that the era of the cybercitizen raises new and important risks of marginalization, on the basis of gender and other factors, and new forms of empowerment.     

Academic Plagiarism: Explanatory Factors from Students’ Perspective

The study of academic plagiarism among university students is at an embryonic stage in Spain and in the other Spanish-speaking countries. This article reports the results of a research, carried out in a medium-sized Spanish university, based on a double method approach—quantitative and qualitative—concerning the factors associated with academic plagiarism from the students’ perspective. The main explanatory factors of the phenomenon, according to the results obtained, are: a) aspects and behaviour of students (bad time management, personal shortcomings when preparing assignments, the elevated number of assignments to be handed in, etc.); b) the opportunities conferred by information and communication technologies to locate, copy and paste information; and, finally, c) aspects related to professors-lecturers and/or the characteristics of the subject-course (lecturers who show no interest in their work, eminently theoretical subjects and assignments, etc.).     

Protecting Human Health and Security in Digital Europe: How to Deal with the “Privacy Paradox”?

This article is the result of an international research between law and ethics scholars from Universities in France and Switzerland, who have been closely collaborating with technical experts on the design and use of information and communication technologies in the fields of human health and security. The interdisciplinary approach is a unique feature and guarantees important new insights in the social, ethical and legal implications of these technologies for the individual and society as a whole. Its aim is to shed light on the tension between secrecy and transparency in the digital era. A special focus is put from the perspectives of psychology, medical ethics and European law on the contradiction between individuals’ motivations for consented processing of personal data and their fears about unknown disclosure, transferal and sharing of personal data via information and communication technologies (named the “privacy paradox”). Potential benefits and harms for the individual and society resulting from the use of computers, mobile phones, the Internet and social media are being discussed. Furthermore, the authors point out the ethical and legal limitations inherent to the processing of personal data in a democratic society governed by the rule of law. Finally, they seek to demonstrate that the impact of information and communication technology use on the individuals’ well-being, the latter being closely correlated with a high level of fundamental rights protection in Europe, is a promising feature of the socalled “e-democracy” as a new way to collectively attribute meaning to large-scale online actions, motivations and ideas.     

Four programs of research in scientific communication

Selected studies of scientific communication, philosophy and sociology of science, sociology of knowledge, and information science are reviewed according to the assumptions they make about scientific information. Based on these assumptions and their historical order of development, the studies are organized into four distinct “programs” of research: artifact studies, user studies, network studies, and laboratory studies. The four programs represent a continuum of definitions of information, from the information-as-commodity definition that is embodied in the artifact studies, to the contextual, meaning-based definition that is characteristic of the laboratory studies. They also provide a rich framework for a renewal of research interest in this area among communication scholars and others interested in the social impacts of information. “When I studied scientific communication back in the sixties, it was a great field to be in ... we thought we knew just about everything there was to know about scientific communication.”¹ Bill Paisley, 1985 Leah A. Lievrouw is assistant professor in the Department of Communication at Rutgers University. Dr. Lievrouw received her PhD from the Annenberg School of Communications at the University of Southern California. Her research interests include scientific communication and the social aspects of telecommunications technologies.     

Communication of Genetic Risk Information to Daughters in Families with Fragile X Syndrome: The Parent’s Perspective

Parental approaches to communicating information about genetic disorders to their children may be an important determinant in how the children manage stress as well as their adjustment and adaptation to that information. We explored communication patterns through structured interviews with 46 parents of daughters who learned about their genetic risk status as minors. Three different levels of knowledge about fragile X syndrome were explored: 1) informing that it has been diagnosed in the family and is an inherited disorder, 2) informing about the possibility of a daughter being a carrier, and 3) if testing had been done, informing the daughter of her actual carrier status. Additionally, parental perceptions of their daughter’s understanding of the information were explored along with frequency of discussions. We found that communication about genetic risk was initiated by the parents. Five disclosure patterns were identified with variations in style, content, and frequency of communication related to the information that was being disclosed. Aspects of resilient communication were present for all levels of disclosure; however, as the information became more personally relevant for the daughter such as disclosure about the possibility of “being a carrier” for fragile X syndrome and there was uncertainty regarding potential outcomes, the conversations included fewer resilient characteristics. Uncertainty about what and how to present information may negatively affect a parent’s ability to include elements of resilient communication when disclosing genetic risk information.