Respecting and fulfilling the right of post-primary pupils to consent to participate in trials and evaluative research: A discussion paper

This paper provides an introduction to issues surrounding the participation rights of young people in research and the implications of their growing involvement in research as well as providing a discourse on the ethical implications related to consent. The unique contribution of this paper is that it considers children’s rights in respect to the increasing opportunities for young people to take part in evaluation research. The aim of this paper, therefore, is to acknowledge the growing involvement for young people in research and the implications of ensuring that their rights of participation are respected. Secondly we will consider the children’s rights legislation and our obligations as researchers to implement this. Finally we will explore consent as an issue in its own right as well as the practicalities of accessing participants. This paper will postulate that any research about young people should involve and prioritise at all stages of the research process; including participation in decision-making. We conclude by identifying five key principles, which we believe can help to facilitate the fulfilment of post-primary pupils’ ability to consent to participate in trials and evaluative research.

Desistance from Sexual Offending: A Policy and Research Agenda Whose Time Has Come

For the past three decades or so, criminal justice policies have been enacted under the assumption that individuals who have been convicted of a sex offense are life course persistent sex offenders. In that context, research has been heavily focused on the assessment of risk and the prediction of sexual recidivism.Simultaneously, little to no attention has been given to the majority of individuals convicted of sex offenses who are not arrested or convicted again.Researchers have witnessed a growing gap between scientific knowledge and the sociolegal response to sexual violence and abuse. The current legal landscapecarries important social implications and significant life course impact for a growing number of individuals. More recently, theoretical and research breakthroughs in the study of desistance from crime and delinquency have been made that can help shed some light on desistance from sex offending. Desistance research, in the context of sex offending, however, represents serious theoretical, ethical, legal, and methodological challenges. To that end, this article introduces a special issue exploring current themes in desistance research by examining the life course of individuals convicted of a sexual offense while contextualizing their experiences of desistance.

The principle of benefit from drug development for patients in clinical research

From an ethical perspective, clinical research involving humans is only acceptable if it involves the potential for benefit. Various characteristics can be applied to differentiate research benefit. Often benefit is categorized in direct or indirect benefit, whereby indirect benefit might be further differentiated in collective or benefit for the society, excluding or including the trial patient in the long term. Ethical guidelines, such as the Declaration of Helsinki in its latest version, do not precisely favor a particular type of benefit.

Clinical Research and Standard of Care — An Unresolved Question?

Ever since the 1996 revision of the Declaration of Helsinki, the World Medical Association has attempted to address ethical and scientific concerns of its diverse stakeholders for Articles 33 (use of placebo) and 34 (posttrial provisions), most recently in 2013. Both are inextricably linked to standard of care, an essential element of any comparative, interventional clinical trial. But has this now 20-year-long ethical debate truly been put to rest? The choice of standard of care in clinical trials remains a complex issue, particularly for comparative trials conducted in emerging countries.

Economics of Ethical and Prosocial Behavior: Experiments on Social Responsibility, Ignorance, and Cheating

In this thesis I experimentally investigate prosocial and ethical behavior in economic interactions. The thesis consists of three experimental research papers that have a broad range of research questions on social responsibility, ignorance and cheating. With these experiments I aim to better understand when and why people behave ethically and/or prosocially and which consequences it has on their own and other players’ payoffs, and on overall efficiency. The results from the three experimental studies suggest that (i) donations to charity by employees are rewarded in an experimental setting, and the effect is driven by reciprocal concerns; (ii) there is a significant fraction of people who decide not to know about negative consequences of own actions, and the sorting of social agents of a low type into ignorance drives self-interested behavior of ignorant agents; and (iii) if the possibility of being exposed as a liar is small, the tendency to lie increases with incentives, indicating that some people have positive and finite costs of lying. Furthermore, when the participants lie, they lie to the full extent, which suggests that the intrinsic cost of lying is fixed.

Perspective of nurses involved in an action-research study on the changes observed in care provision: results from a focus group

Background According to the Nursing Role Effectiveness Model, the structural components (nurses, patients, organizational variables) may directly BMC Health Services Research 2016, Volume 16 Suppl 3 Page 41 of 132 or indirectly influence the care outcomes through the process (actions developed by the nurses). Objectives: To identify the changes that, from the nurses' perspective, occurred during the provision of care to patients with peripheral venous catheters (PVCs) between the first and the second phase of the Action-Research (AR) study, and the components that influenced these changes. Methods During the second phase of the AR study (December, 2011), a focus group composed of six nurses was held at a medicine unit of a central hospital. A script was used with six open-ended questions. All ethical procedures were followed. Results Positive changes in nursing care provision to patients with PVCs were identified related to the type of dressing used, patient monitoring, aseptic care, and infusion rate. The nurses believed that some variables of the organizational component influenced those changes, such as the centralization of the material used for catheterization or the availability of materials, such as transparent dressings. The nurses also valued the following aspects: knowledge of the research findings of the first phase; training sessions on the topic; and, above all, the nurses' engagement throughout the process of change in care provision. Conclusions Considering the model of analysis used, we found that the changes identified in nursing care resulted from several factors, with the engagement of the professionals themselves in the change process being considered a key aspect.

Ethical aspects of children’s perceptions of information-giving in care

The aim of this study was to identify key aspects in the exchange of information and to determine how nurses communicate news to hospitalised children. For this study, we applied the critical incident technique with 30 children aged between 8 and 14 years. Data were collected in paediatric units in a hospital in Alicante (Spain) using participant observation and semi-structured interviews. The analysis yielded three main categories: the children’s reaction to the information, nursing staff behaviour as a key aspect in the exchange of information and communication of news as well as children’s experience. This article emphasises the need to promote children’s consent and participation in nursing interventions. An analysis of these aspects will verify whether children’s rights are being respected and taken into account in order to promote children’s well-being and adaptation to hospitalisation.

Hysterical inquiry and autoethnography : a Lacanian alternative to institutionalised ethical commandments

A critical and interpretative investigation of the ethical dimension of policies about school digital technologies

This thesis examines digital technologies policies designed for Australian schools and the ways they are understood and interpreted by students, school staff, teachers, principals and policy writers. This study explores the ways these research participant groups interpret and understand the ‘ethical dimension’ of schools’ digital technologies policies for teaching and learning. In this thesis the ethical dimension is considered to be a dynamic concept which encompasses various elements including; decisions, actions, values, issues, debates, education, discourses, and notions of right and wrong, in relation to ethics and uses of digital technologies in schools. In this study policy is taken to mean not only written texts but discursive processes, policy documents including national declarations, strategic plans and ‘acceptable use’ policies to guide the use of digital technologies in schools. The research is situated in the context of changes that have occurred in Australia and internationally over the last decade that have seen a greater focus on the access to and use of digital technologies in schools. In Australian school education, the attention placed on digital technologies in schools has seen the release of policies at the national, state, territory, education office and school levels, to guide their use. Prominent among these policies has been the Digital Education Revolution policy, launched in 2007 and concluded in 2013. This research aims to answers the question: What does an investigation reveal about understandings of the ethical dimension of digital technologies policies and their implementation in school education? The objective of this research is to examine the ethical dimension of digital technologies policies and to interpret and understand the responses of the research participants to the issues, silences, discourses and language, which characterise this dimension. In doing so, it is intended that the research can allow the participants to have a voice that, may be different to the official discourses located in digital technologies policies. The thesis takes a critical and interpretative approach to policies and examines the role of digital technologies policies as discourse. Interpretative theory is utilised as it provides a conceptual lens from which to interpret different perspectives and the implications of these in the construction of meaning in relation to schools’ digital technologies policies. Critical theory is used in tandem with interpretative theory as it represents a conceptual basis from which to critique and question underlying assumptions and discourses that are associated with the ethical dimension of schools’ digital technologies policies. The research methods used are semi-structured interviews and policy document analysis. Policies from the national, state, territory, education office and school level were analysed and contribute to understanding the way the ethical dimension of digital technologies policies is represented as a discourse. Students, school staff, teachers, principals and policy writers participated in research interviews and their views and perspectives were canvassed in relation to the ethical use of digital technologies and the policies that are designed to regulate their use. The thesis presents an argument that the ethical dimension of schools’ digital technologies policies and use is an under-researched area, and there are gaps in understanding and knowledge in the literature which remain to be addressed. It is envisaged that the thesis can make a meaningful contribution to understand the ways in which schools’ digital technologies policies are understood in school contexts. It is also envisaged that the findings from the research can inform policy development by analysing the voices and views of those in schools. The findings of the policy analysis revealed that there is little attention given to the ethical dimension in digital technologies at the national level. A discourse of compliance and control pervades digital technologies policies from the state, education office and school levels, which reduces ethical considerations to technical, legal and regulatory requirements. The discourse is largely instrumentalist and neglects the educative dimension of digital technologies which has the capacity to engender their ethical use. The findings from the interview conversations revealed that students, school staff and teachers perceive digital technologies policies to be difficult to understand, and not relevant to their situation and needs. They also expressed a desire to have greater consultation and participation in the formation and enactment of digital technologies policies, and they believe they are marginalised from these processes in their schools. Arising from the analysis of the policies and interview conversations, an argument is presented that in the light of the prominent role played by digital technologies and their potential for enhancing all aspects of school education, more research is required to provide a more holistic and richer understanding of the policies that are constructed to control and mediate their use.

Fundaments of the ethical acting in university students

It is urgent that the superior Education in the health area develops in the students a pro-active ethical commitment which is translated into the creation of socio-professional and rational and clarified socio-cultural values.