scholarly journals Ethics and Research with Children

2018 ◽  
Keyword(s):  
Pharmaceutical Industry ◽  
Research Participation ◽  
Economic Incentives ◽  
Pediatric Research ◽  
Research Subjects ◽  
Research With Children ◽  
Dying Children ◽  
Participation In Research ◽  
Case Based

In Ethics and Research with Children, authors present and discuss challenging cases in the field of pediatric research ethics. This 2nd Edition includes a revised and updated introduction along with 13 completely new chapters with compelling cases, analysis and questions for discussion. After years of debate and controversy, fundamental questions about the morality of pediatric research persist: Is it ever permissible to use a child as a means to an end? How much authority should parents have over decisions about research that involves young children? What should be the role of the older child in decisions about research participation? How do the dynamics of hope and desperation influence decisions about research involving dying children? Should children or their parents be paid for participation in research? How do economic incentives for doctors, researchers, and the pharmaceutical industry factor into the decisions? Most importantly, how can the twin goals of access to the benefits of clinical research and protection from the risks research involves be reconciled? This volume complements but does not replace the 1st Edition of this book published in 2005. Using a case-based approach, the Second Edition of Ethics and Research with Children provides a balanced and thorough account of the enduring dilemmas that arise when children become research subjects

Ethics and Research with Children

2018 ◽  
pp. 285-312
Author(s):  
Robert M. Nelson ◽  
Eric Kodish
Keyword(s):  
Research Participation ◽  
Pediatric Research ◽  
Best Interests ◽  
Control Group ◽  
Vulnerable Children ◽  
Research Risks ◽  
Research With Children ◽  
History Of ◽  
Ethical Tension

This chapter explores the ethical tension between protecting vulnerable children from research risks and protecting children through access to appropriate research in support of safe and effective pediatric products. The history of the debate over pediatric research is reviewed briefly, along with central ethical themes within that debate. Each of the chapters in this volume are set within this context. Themes examined include the role of the clinician-investigator, the concept of the best interests of the child, appropriate risk assessment, the importance of component analysis to the assessment of pediatric research protocols, the choice of an appropriate control group, parental permission and child assent, compensating children for research participation, and the fetus as research subject.

Ethics and Research with Children

2018 ◽  
pp. 1-6
Author(s):  
Eric Kodish ◽  
Robert M. Nelson
Keyword(s):  
Historical Context ◽  
Pediatric Research ◽  
Research With Children ◽  
Policy Shifts ◽  
Case Based ◽  
Central Tension

This brief introductory chapter highlights the central tension between the need to protect children from research risk with the imperative to conduct pediatric research. After reviewing several policy shifts that help to provide historical context, the authors discuss the case-based method that is employed in the remainder of the book. The value and perils of using cases are explored. The chapter subsequently provides some suggestions for how the book might best be used inside and out of the classroom and concludes with a discussion of the ultimate aspiration for this second edition of Ethics and Research with Children: A Case-Based Approach.

What makes clinical labour different? The case of human guinea pigging

2018 ◽  
Vol 44 (9) ◽  
pp. 638-642 ◽  
Author(s):  
Joanna Różyńska
Keyword(s):  
Healthy Volunteers ◽  
Research Participation ◽  
Hourly Wage ◽  
Full Time ◽  
Research Subjects ◽  
Unskilled Labour ◽  
Wage Payment ◽  
Part Time ◽  
Research Volunteers

Each year thousands of individuals enrol in clinical trials as healthy volunteers to earn money. Some of them pursue research participation as a full-time or at least a part-time job. They call themselves professional or semiprofessional guinea pigs. The practice of paying healthy volunteers raises numerous ethical concerns. Different payment models have been discussed in literature. Dickert and Grady argue for a wage-payment model. This model gives research subjects a standardised hourly wage, and it is based on an assumption that research participation is morally indistinguishable from other forms of unskilled labour. In this paper, I will challenge this assumption. I will argue that human guinea pigging has particular characteristics which taken together make it significantly different from other forms of labour. (1) Participation in research is skill-independent. Healthy volunteers are valuable not because they are skilful persons, but because they are human bodies. (2) The role of research volunteers is mainly passive. They are not asked to produce goods or deliver services. They are paid for enduring unpleasant, painful and risky interventions performed by investigators. (3) Research volunteering involves inherent risks and uncertainties, and subjects have little or no control over their minimisation and materialisation. I conclude that participation in clinical research is a specific kind of activity. It is more like renting out one’s body to strangers, than working. Thus, research participation should not be treated on par with other forms of employment.

10. Clinical Research

Medical Law ◽  
2019 ◽  
pp. 506-572
Author(s):  
Emily Jackson
Keyword(s):  
Clinical Research ◽  
Regulatory System ◽  
Research Participation ◽  
Ethics Committees ◽  
Publication Ethics ◽  
Conflicts Of Interests ◽  
Ethical Codes ◽  
Participation In Research ◽  
Academic Debate

All books in this flagship series contain carefully selected substantial extracts from key cases, legislation, and academic debate, providing students with a stand-alone resource. This chapter first summarizes the rules governing experiments on animals and explains the meaning of ‘research’. It then examines: international ethical codes and the UK’s regulatory system; the role of ethics committees in authorizing and monitoring research; whether the benefits and burdens of research participation are evenly distributed; conflicts of interests and publication ethics; and compensation for injuries sustained as a result of participation in research.

Researching Children: Are We Getting it Right?: A Discussion of Ethics

2012 ◽  
Vol 54 (2) ◽  
pp. 177-198 ◽  
Author(s):  
Agnes Nairn ◽  
Barbie Clarke
Keyword(s):  
Best Practice ◽  
Well Being ◽  
Cultural Patterns ◽  
Good Industry ◽  
New Techniques ◽  
Research With Children ◽  
Children’S Views ◽  
Special Case ◽  
Participation In Research

As the role of children in society becomes more prominent, their participation in research seems set to increase. In this paper we review whether we are getting the ethics of children's research right. We show that, since the late 1980s, children have been treated universally as a special case and that they have been accorded their own special set of human rights (UNCRC), which primarily grants them rights to protection and participation. We go on to argue (with practical examples) that the core MRS research principles of well-being, voluntary informed consent and privacy/confidentiality must be applied to children with particular caution and care. We note that, as research with children grows and as new techniques are developed, we are presented with fresh challenges for keeping children safe and maintaining their trust. We end by presenting the results of a survey that sought children's views on being research participants in a quite sensitive piece of research. We found that children are highly appreciative of being consulted about their lives in general and being asked about their feelings. However we also found that some children can be uncomfortable with some of the issues raised and can feel compelled to answer the questions. We conclude that, while we have good industry codes, ethics evolves with shifting social, political and cultural patterns, and we need to keep challenging ourselves to maintain best practice.

Conclusion

2018 ◽  
Author(s):  
Jaroslav Tir ◽  
Johannes Karreth
Keyword(s):  
Civil War ◽  
Conflict Management ◽  
Political Violence ◽  
Economic Incentives ◽  
Economic Benefits ◽  
Lessons Learned ◽  
Intergovernmental Organizations ◽  
State Fragility ◽  
International Environment

After summarizing the theoretical arguments and findings of this book, we discuss key lessons learned from our study. The international environment has a significant influence on civil war development and prevention. Amplifying their conflict-preventing influence on member-states, highly structured intergovernmental organizations (IGOs) often coordinate their activities, especially in the area of political violence and state fragility. We then identify a number of tangible, economic incentives as the main pathways of this influence. Overall, this book suggests that the economic benefits of peace provide a potent temptation—for both governments and rebels—to settle low-level armed conflict before it can escalate to full-scale civil war. With these lessons learned, we also identify suggestions for both the research into and practice of conflict management. The chapter closes by pointing to opportunities for making use of our findings to further capitalize on the role of highly structured IGOs in civil war prevention.

Career Guidance: Living on the Edge of Public Policy

2020 ◽  
Author(s):  
John McCarthy ◽  
Tibor Bors Borbély-Pecze
Keyword(s):  
Public Policy ◽  
Social Inclusion ◽  
Career Guidance ◽  
Evaluation Studies ◽  
National Level ◽  
Policy Instruments ◽  
Economic Incentives ◽  
Policy Formation ◽  
Education And Employment

Public policy formation and implementation for career guidance provision are complex issues, not least because in most countries career guidance is a peripheral part of legislation for education, employment, and social inclusion. Policy solutions are compromises by nature. Regulations and economic incentives are the main policy instruments for career guidance provision, but there is often incoherence between the intentions of the regulations and the economic incentives provided for policy implementation. The intermediary organizations that serve to implement policy add significant variability to policy effects. International bodies and organizations have shown significant interest in the role of career guidance in education and employment policies through the undertaking of policy reviews, the formulation of recommendations for career guidance, and, in some cases, providing economic incentives to support their implementation. However, there is a dearth of evaluation studies of policy formation and implementation at the national level.

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