BackgroundInnovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment.MethodsAn interdisciplinary workshop jointly organised by the University of Oxford (...) and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach.ResultsDynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies.ConclusionsDynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross-border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re-consider their relationship with research participants and adopt new procedures. (shrink)

Personalized medicine aims to tailor disease prevention, diagnosis, and treatment to individuals on the basis of their genes, lifestyle and environments. Patient and interest organizations may potentially play an important role in the realization of PM. This paper investigates the views and perspectives on PM of a variety of PIOs. Semi-structured telephone interviews were conducted among leading representatives of 13 PIOs located in Europe and North-America. The data collected were analysed using a conventional content analysis approach. The PIO representatives supported (...) the realization of PM but feared that many financial, structural and organizational challenges may delay its realization. They encouraged strategies to modernize drug licencing mechanisms, develop research and data sharing infrastructures, and educate patients and health care professionals in PM. Notably, they emphasized the importance of developing PM in an equitable way and taking into consideration the patients’ needs, values and personal situation. Despite varying levels of awareness regarding PM, the PIO representatives expressed willingness to engage in the PM agenda and recommended that PIOs work closely with policy-makers to design PM in a way that truly addresses the needs and concerns of patients. PIOs have the potential to become central drivers of the PM agenda. Collaborations should be further developed between PIOs, researchers, drug developers and health care authorities. (shrink)

This paper pertains to research works aiming at linking ethics and automated reasoning in autonomous machines. It focuses on a formal approach that is intended to be the basis of an artificial agent’s reasoning that could be considered by a human observer as an ethical reasoning. The approach includes some formal tools to describe a situation and models of ethical principles that are designed to automatically compute a judgement on possible decisions that can be made in a given situation and (...) explain why a given decision is ethically acceptable or not. It is illustrated on three ethical frameworks—utilitarian ethics, deontological ethics and the Doctrine of Double effect whose formal models are tested on ethical dilemmas so as to examine how they respond to those dilemmas and to highlight the issues at stake when a formal approach to ethical concepts is considered. The whole approach is instantiated on the drone dilemma, a thought experiment we have designed; this allows the discrepancies that exist between the judgements of the various ethical frameworks to be shown. The final discussion allows us to highlight the different sources of subjectivity of the approach, despite the fact that concepts are expressed in a more rigorous way than in natural language: indeed, the formal approach enables subjectivity to be identified and located more precisely. (shrink)

In this paper we reflect on the effectiveness of cognitive mapping as a method to study farm functioning in its complexity and its diverse forms in the framework of our own experiment with a diverse group of Flemish beef farmers. With a structured direct elicitation method we gathered 30 CMs. We analyzed the content of these maps both qualitatively and quantitatively. The central role of the concept “Income” in most maps indicated a shared concern for economic security. Further, the CMs (...) indicated that farmers dealt with this shared social reality differently, as the relationships included in their maps referred to different functional processes relating to revenue streams, marketing strategies, investment decisions, dependence on production inputs, on-farm resource management, and personal well-being. With a clustering algorithm we grouped farmers based on the relationships in their maps, which allowed us to trace some of the broader patterns within the data, such as the existence of more business- and investment-minded farmers, in contrast to farmers focused on their quality of life, and animal production-oriented in contrast to marketing-oriented farmers. Taking into account farmers’ comments, we find that the applied methods had limited capability to classify farmers based on their perspectives on farming. Still, the system presentations proved useful to study what aspects farmers were working on or towards, and how these aspects may actually fit together as a whole. CMing was therefore mostly effective in exploring farm functioning in its complexity, and less so in exploring farm functioning in its diversity. (shrink)

Il y a un mot de passe pour entrer dans ce livre. Un mot de passe facile à retenir. C'est le mot AMOUR. L'auteur ne le révèle qu'à la toute fin, mais dès les premières pages, on le devine. On a tôt fait de découvrir un homme en amour avec «son» Plateau, où il habite depuis plus de trente ans. Cet amour bien réel en cache un autre plus profond, l'amour de la langue française. Quelques essais bien sentis en témoignent (...) éloquemment. C'est ainsi qu'à travers récits et essais, dans une langue belle et empreinte d'humour, Jules Tessier nous invite à partager des souvenirs où il sera question de pièces de théâtre, de personnages méconnus mais hauts en couleur, de conseils pour augmenter sa longévité, d'invitations au voyage et même de péchés et de vertus! «Un dénominateur commun relie tous ces chapitres, que ce soit le point de vue d'un observateur ou d'un actant: un vif intérêt, peut-être même une passion pour les thèmes abordés.» Au cours de sa carrière universitaire, Jules Tessier s'est intéressé notamment aux manifestations de la vie française sur le continent, tant sur le plan de la langue que sur celui de la littérature. Il est à l'origine du périodique Francophonies d'Amérique qu'il a dirigé pendant dix ans, à partir de sa fondation en 1991, et vingt-cinq ans plus tard, cette revue est toujours aussi nécessaire et dynamique. Mot de passe est le quatrième d'une série de titres consacrés à des essais et inaugurée par Sur la terre comme un ciel (Fides, 2010). (shrink)

This article describes a project that seeks to join the experiences of several fields of knowledge, through systems thinking, promoting the improvement of the quality of life in the Saltillo valley community. All this is done through an action- research process, which integrates most of the available elements. This project considers the history of the community and the complex interaction of population with natural ecosystems. The project goes into detail in the collective learning and the community conscience development, based on (...) social ethics, dialogue, public participation, open information, and the shared knowledge processes, all of these tending to the improvement of the relations between humans and nature, and therefore to reach the sustainable development of the region. (shrink)

La réflexion sur la contrepartie que la télévision publique doit offrir au paiement de la redevance par l'ensemble des téléspectateurs relève d'un débat public orchestré par les représentants de l'Etat. La télévision publique ne peut se soustraire à une mesure de son audience, mais peut proposer des critères d'évaluation appropriés, comme les indicateurs d'audience cumulée qui expriment l'étendue du public touché. Plus fondamentalement, afin de développer le dialogue avec le public, France Télévisions a instauré un droit de chaque téléspectateur à (...) être écouté, à obtenir une réponse et à s'assurer que ses remarques seront considérées avec respect, à travers un dispositif de médiateurs et un service de relation avec les téléspectateurs.Any thought on what public television must offer to viewers in return for their licence fee is dependent on a public discussion orchestrated by State representatives. Public television cannot be excluded from audience ratings but can propose adapted criteria of evaluation, like the indicators of cumulated audience ratings which express the range of the audience covered. Basically, to develop a dialogue with the public France Télévisions adopted the policy that each viewer should have the right to be listened to, the right to obtain an answer and the right to have his or her remarks considered with respect through a system of mediators and a customer service department for viewers. (shrink)

The purpose of the present two studies was to investigate whether in framing messages that target salient beliefs of youth, the type of goal framed matter to promote physical activity participation among low-active adolescents. More specifically, the main trial compared the effect of intrinsic and extrinsic-goal framing messages alongside planning to a control condition on low-active adolescents’ physical activity, intention, attitude, and exercise goals, and examined the potential meditational effect of these variables between condition and PA. Low-active students from fifteen (...) classes were assigned to one of these three conditions. PA was assessed using an accelerometer, and the socio-cognitive mediators were measured at baseline and post-test, and the intention was measured again at follow-up. Results showed that compared to adolescents in the CC group, those in the experimental conditions did not do more moderate PA, but carried out more light PA, and yielded an increase in attitude and intention. Mediational analysis revealed no significant effect of the potential mediators. (shrink)

In vitro fertilisation (IVF) daily practice reveals that couples are willing to take greater risks than doctors if there is a higher chance of pregnancy. Arising from this is a frequently addressed issue regarding the embryo transfer strategy: single or double embryo transfer? The dilemma is faced by patients, as well as physicians, who are caught between the possibility of no pregnancies at all and facing the prospect of iatrogenic twin gestation. How could the couple's preferences concerning how many children (...) they would like be taken into account in determining the number of embryos transferred? How should the physician exercise his medical responsibility towards his patients and the unborn child? An effective approach could be to enhance a couple’s autonomy by advocating a medical beneficence that incorporates patients’ values. This can be achieved through a case-by-case approach in a deliberative process of decision-making which includes real patient-centred communication. (shrink)

Individual research results from population-based genetic and genomic research are traditionally not disclosed to research participants. Current practices of non-disclosure are, however, being challenged by an increasing number of scientists, ethicists and policy-makers who make arguments in favour of disclosing at least individual results of potential health or lifestyle significance to research participants. Simultaneously, research participants are expressing greater interest in accessing their results. This article first provides an overview of main arguments for and against the disclosure of individual research (...) results to research participants. Next, it discusses the need for a move from the current ethical framework under which researchers operate, which is rather protective of research participants and does not encourage disclosure, to a new ethical framework that would better cope with current developments within the field. Comparative analysis of existing and potential ethical frameworks favours implementation of an ethical framework aimed at enhancing the autonomy of research participants through the disclosure of individual research results. Finally, this article explores practical models of disclosure that could be used under such a new framework. A model of disclosure that takes into account the two key criteria of communicability of research results and the research participant’s preferences to determine which results to disclose is found to comply best with the selected ethical framework. (shrink)