Does research into sensitive areas do harm? Experiences of research participation after a child's diagnosis with Ewing's sarcoma

Objective: To investigate family members' experiences of involvement in a previous study (conducted August 1995 to June 1997) following their child's diagnosis with Ewing's sarcoma. Design: Retrospective survey, conducted between 1 November and 30 November 1997, using a postal questionnaire. Participants: Eighty-one of 97 families who had previously completed an in-depth interview as part of a national case-control study of Ewing's sarcoma. Main outcome measures: Participants' views on how participation in the previous study had affected them and what motivated them to participate. Results: Most study participants indicated that taking part in the previous study had been a positive experience. Most (n = 79 [97.5%]) believed their involvement would benefit others and were glad to have participated, despite expecting and finding some parts of the interview to be painful. Parents whose child was still alive at the time of the interview recalled participation as more painful than those whose child had died before the interview. Parents who had completed the interview less than a year before our study recalled it as being more painful than those who had completed it more than a year before. Conclusions: That people suffering bereavement are generally eager to participate in research and may indeed find it a positive experience is useful information for members of ethics review boards and other gatekeepers, who frequently need to determine whether studies into sensitive areas should be approved. Such information may also help members of the community to make an informed decision regarding participation in such research.

Inter-organisational networks, value creation and the process of technology integration in research and development

Traditional methods of R&D management are no longer sufficient for embracing innovations and leveraging complex new technologies to fully integrated positions in established systems. This paper presents the view that the technology integration process is a result of fundamental interactions embedded in inter-organisational activities. Emerging industries, high technology companies and knowledge intensive organisations owe a large part of their viability to complex networks of inter-organisational interactions and relationships. R&D organisations are the gatekeepers in the technology integration process with their initial sanction and motivation to develop technologies providing the first point of entry. Networks rely on the activities of stakeholders to provide the foundations of collaborative R&D activities, business-to-business marketing and strategic alliances. Such complex inter-organisational interactions and relationships influence value creation and organisational goals as stakeholders seek to gain investment opportunities. A theoretical model is developed here that contributes to our understanding of technology integration (adoption) as a dynamic process, which is simultaneously structured and enacted through the activities of stakeholders and organisations in complex inter-organisational networks of sanction and integration.

The role of neurotransmission and the Chopper domain in p75 neurotrophin receptor death signaling

The role of p75 neurotrophin receptor (p75(NTR)) in mediating cell death is now well charaterized, however, it is only recently that details of the death signaling pathway have become clearer. This review focuses on the importance of the juxtamembrane Chopper domain region of p75(NTR) in this process. Evidence supporting the involvement of K+ efflux, the apoptosome (caspase-9, apoptosis activating factor-1, APAF-1, and Bcl-(xL)), caspase-3, c-jun kinase, and p53 in the p75(NTR) cell death pathway is discussed and regulatory roles for the p75(NTR) ectodomain and death domain are proposed. The role of synaptic activity is also discussed, in particular the importance of neutrotransmitter-activated K+ channels acting as the gatekeepers of cell survival decisions during development and in neurodegenerative conditions.

The Opinion Editorial: teaching physiology outside the box

Improving the public understanding of science is an important challenge for the future professional scientists who are our current undergraduates. In this paper, we present a conceptual model that explores the role of mass media as community gatekeepers of new scientific findings. This model frames the benefits for undergraduate science students to learn about media genres so that they can learn to communicate science more effectively to nonprofessional audiences. Informed by this Media Role model, we then detail a novel writing task for undergraduate physiology students, the Opinion Editorial (Op-Ed), and an accompanying Peer Review. The Op-Ed genre was directly taught to the students by a professional journalist. As an assessment task, students presented a recent, highly technical paper as an Op-Ed. This was assessed by both faculty members and peers using a detailed assessment rubric. Most students were able to replicate the features of Op-Eds and attained high grades on their writing tasks. Survey data from final-year physiology students (n = 230) were collected before and after the implementation of the Op-Ed/Peer Review. These indicated that most students were aware of the importance of scientists to effectively communicate their knowledge to nonprofessional audiences, that the Op-Ed writing task was challenging, and that they believed that their ability to write to nonprofessional audiences was improved after explicit teaching and feedback.