The importance of the general practitioner as an information source for patients with hereditary haemochromatosis

Objective To explore hereditary haemochromatosis (HH) patients’ perspectives on genetic information, namely the types of sources used, preferred or trusted. Methods A survey online was conducted by the European Federation of Associations of Patients with Haemochromatosis (EFAPH) and applied to members of nine National Associations. Results From a total of 1019 validated questionnaires, 895 respondents had performed a genetic testing for HH. From these, 627 self-declared that they were sufficiently informed about the implications of the genetic test to their health. The majority (66%) obtained the information from a specialist doctor, but would like to obtain it from the family doctor. However, the specialist was still the one they trusted more (69%). Regarding the 298 respondents who did not feel sufficiently informed, the majority (78%) also would like to have information from the family doctor although they also trusted the specialist more (75%). A different perspective was reported when patients were asked about the implications of the genetic testing to their family members, where the majority of respondents preferred obtaining information from a specialist (69%). Conclusion This study elucidates the patients’ needs for information and identifies the general practitioner (GP) as the preferred source to obtain information about HH. Practice implications These results may have important implications in future strategies for HH awareness, giving a special emphasis on GPs as the main players

The interface of science: the case for a broader definition of research management

This paper results from on-going reflection within the practitioners group Plataforma de Interface à Ciência (Platform of Professionals at the Interface of Science), an informal nationwide network in Portugal that brings together professionals involved in a large scope of activities related to research management, knowledge transfer and science communication. Due to the wide scope of functions and profiles of these professionals, they are not publicly nor institutionally recognised as part of the same professional group, which raises barriers for their recognition as relevant players in the research & innovation ecosystem and full achievement of their potential. We take stock of the several definitions of their roles found in the literature and conclude on the need for an inclusive approach to consider these roles as a profession. We propose the designation of Professionals at the Interface of Science (PIoS) to name this wide group of professionals that sits at the interface at all scientific disciplines.This work was supported by European Commission: [EnvMetaGen (grant agreement no 668981)]; Fundação para a Ciência e a Tecnologia: [Grant Number LISBOA-01-0145- FEDER-007654,LISBOA-01-0145-FEDER-007660,POCI-01-0145- FEDER-007274,POCI-01-0145-FEDER-007746,UID/Multi/04423/2013,UID/QUI/50006/2013, UID/IC/4255/2013]; COMPETE2020 – Programa Operacional Competitividade e Internacionalização (POCI): [Grant Number LISBOA-01-0145-FEDER-007654, LISBOA-01-0145-FEDER-007660,POCI-01-0145-FEDER-007274, POCI-01-0145-FEDER-007746,UID/Multi/04423/2013].info:eu-repo/semantics/publishedVersio

Bottom up ethics - neuroenhancement in education and employment

Neuroenhancement involves the use of neurotechnologies to improve cognitive, affective or behavioural functioning, where these are not judged to be clinically impaired. Questions about enhancement have become one of the key topics of neuroethics over the past decade. The current study draws on in-depth public engagement activities in ten European countries giving a bottom-up perspective on the ethics and desirability of enhancement. This informed the design of an online contrastive vignette experiment that was administered to representative samples of 1000 respondents in the ten countries and the United States. The experiment investigated how the gender of the protagonist, his or her level of performance, the efficacy of the enhancer and the mode of enhancement affected support for neuroenhancement in both educational and employment contexts. Of these, higher efficacy and lower performance were found to increase willingness to support enhancement. A series of commonly articulated claims about the individual and societal dimensions of neuroenhancement were derived from the public engagement activities. Underlying these claims, multivariate analysis identified two social values. The Societal/Protective highlights counter normative consequences and opposes the use enhancers. The Individual/Proactionary highlights opportunities and supports use. For most respondents these values are not mutually exclusive. This suggests that for many neuroenhancement is viewed simultaneously as a source of both promise and concern

"The person in power told me to"-European PhD students' perspectives on guest authorship and good authorship practice.

Questionable authorship practices in scientific publishing are detrimental to research quality and management. The existing literature dealing with the prevalence, and perceptions, of such practices has focused on the medical sciences, and on experienced researchers. In contrast, this study investigated how younger researchers (PhD students) from across the faculties view fair authorship attribution, their experience with granting guest authorships to more powerful researchers and their reasons for doing so. Data for the study were collected in a survey of European PhD students. The final dataset included 1,336 participants from five European countries (Denmark, Hungary, Ireland, Portugal, and Switzerland) representing all major disciplines. Approximately three in ten reported that they had granted at least one guest authorship to "a person in power". Half of these indicated that they had done so because they had been told to do so by the person in power. Participants from the medical, natural and technical sciences were much more likely to state that they had granted a guest authorship than those from other faculties. We identified four general views about what is sufficient for co-authorship. There were two dominant views. The first (inclusive view) considered a broad range of contributions to merit co-authorship. The second (strongly writing-oriented) emphasised that co-authors must have written a piece of the manuscript text. The inclusive view dominated in the natural, technical, and medical sciences. Participants from other faculties were more evenly distributed between the inclusive and writing oriented view. Those with an inclusive view were most likely to indicate that they have granted a guest authorship. According to the experiences of our participants, questionable authorship practices are prevalent among early-career researchers, and they appear to be reinforced through a combination of coercive power relations and dominant norms in some research cultures, particularly in the natural, technical, and medical sciences

“The person in power told me to”—European PhD students’ perspectives on guest authorship and good authorship practice

Questionable authorship practices in scientific publishing are detrimental to research quality and management. The existing literature dealing with the prevalence, and perceptions, of such practices has focused on the medical sciences, and on experienced researchers. In contrast, this study investigated how younger researchers (PhD students) from across the faculties view fair authorship attribution, their experience with granting guest authorships to more powerful researchers and their reasons for doing so. Data for the study were collected in a survey of European PhD students. The final dataset included 1,336 participants from five European countries (Denmark, Hungary, Ireland, Portugal, and Switzerland) representing all major disciplines. Approximately three in ten reported that they had granted at least one guest authorship to “a person in power”. Half of these indicated that they had done so because they had been told to do so by the person in power. Participants from the medical, natural and technical sciences were much more likely to state that they had granted a guest authorship than those from other faculties. We identified four general views about what is sufficient for co-authorship. There were two dominant views. The first (inclusive view) considered a broad range of contributions to merit co-authorship. The second (strongly writing-oriented) emphasised that co-authors must have written a piece of the manuscript text. The inclusive view dominated in the natural, technical, and medical sciences. Participants from other faculties were more evenly distributed between the inclusive and writing oriented view. Those with an inclusive view were most likely to indicate that they have granted a guest authorship. According to the experiences of our participants, questionable authorship practices are prevalent among early-career researchers, and they appear to be reinforced through a combination of coercive power relations and dominant norms in some research cultures, particularly in the natural, technical, and medical sciences

Lack of ethics or lack of knowledge? European upper secondary students’ doubts and misconceptions about integrity issues

Abstract Plagiarism and other transgressions of the norms of academic integrity appear to be a persistent problem among upper secondary students. Numerous surveys have revealed high levels of infringement of what appear to be clearly stated rules. Less attention has been given to students’ understanding of academic integrity, and to the potential misconceptions and false beliefs that may make it difficult for them to comply with existing rules and handle complex real-life situations. In this paper we report findings from a survey of European upper secondary students’ views on issues relating to academic integrity. We relate these findings to the students’ training about academic integrity, self-reported level of questionable behavior and country of study. A total of 1654 students at 51 institutions located in 6 European countries participated in the study. The participants generally believed they had a good understanding of the rules applying to them and knew how to behave in compliance with norms of academic integrity. The results indicate, however, that often, in practice, this belief was mistaken. Many students had an inadequate understanding of core elements of academic integrity. They were uncertain about how to act, and they struggled in the handling of complex situations that require context-sensitive judgement. While some differences between countries were identified, they were modest and exhibited no clear pattern. Our results also suggest that reducing students’ level of uncertainty and, to a lesser degree, improving their level of knowledge could lead them to engage less in certain types of questionable behaviours. Surprisingly, the effect of academic training is modest and ambiguous. The study also confirms that perception of peer behaviour has the strongest association with student engagement in questionable behaviours. Thus, academic integrity at the upper secondary level cannot be explained simply in terms of individual ethics or knowledge.</p

Grey zones and good practice: A European survey of academic integrity among undergraduate students

Good academic practice is more than the avoidance of clear-cut cheating. It also involves navigation of the gray zones between cheating and good practice. The existing literature has left students’ understanding of gray zone practices largely unexplored. To begin filling in this gap, we present results from a questionnaire study involving N = 1639 undergraduate students from seven European countries representing all major disciplines. We show that large numbers of these students are unable to identify gray area issues and lack sensitivity to the context dependence of these. We also show that a considerable proportion of students have a poor understanding of concepts like plagiarism and falsification, not only in gray zone scenarios, but also in cases of relatively clear-cut cheating. Our results are similar across the faculties and countries of study, and even for students who have attended academic integrity training. We discuss the implications of this for academic integrity training

Distribution of the four views on authorship across datatypes (shares based on predicted probabilities).

Distribution of the four views on authorship across datatypes (shares based on predicted probabilities).</p