CRNINI workshop: Ethics in Research with children

Guidance for ethical research projects   •Good practice in children’s research •Building on knowledge gained in GUI •Initiated by DCYA   •Produced by Working Group with research, legal, policy and child protection expertise   Patricia's presentation is an analysis of at data from the Growing Up in Ireland study:  The relationship between family tranisitions and children's well being.

Committees for ethics in research involving human subjects

In Brazil since October 1996 there have been guidelines for research involving human subjects. Now human subjects know when their treatment is part of research. Deceit is no longer tolerated. But is not enough to say we offer an explanation to the potential subject and we offer a choice before he or she is confronted with an informed consent form. As in all professional activity, scientific investigation needs social controls. In Brazil, the ultimate responsibility of an investigation lies on the investigator, but in every institution where research is carried out there is a Committee for Ethics in Research. All Committees are subordinated to the National Commission of Ethics in Research, which is submitted to the Brazilian Institute of Health. During 2005 around 17,000 protocols involving 700,000 human subjects were revised by 475 Committees distributed all over the country. Approximately 7,000 people are now working in these Committees.

FLYER: Ethics, Consent and Participation in Research With Children and Young People

  Date: Friday, 14 June 2013   Time:10:30 – 13.30 Location: G13, Western Gateway Building, University College Cork The children's Research Network for Ireland and Northern Ireland in conjunction with the Children and Young People Research Cluster at the Institute for Social Sciences in the 21st Century at UCC are holding a workshop on ethics, consent and participation in research with children and young people. The event will explore some of the complex ethical issues involved in conducting research with children and young people, from the perspectives of researchers, children, families and service-providers.  

Key issues in determining the ethics of research subject payment: the special case of drug abuse epidemiology

The authors identify key issues that researchers, funding bodies, ethics committees and ethicists might consider in contemplating research subject payment ethics. They argue that what is missing from the broader debate is due consideration of ethics committee decision processes; research subject reasons for participation; and current research practices. The authors explore these issues and how they relate to existing guidelines on voluntary consent, and arguments that have been proposed for and against research subject payments. (non- author abstract)

Truth - the essential dimension of ethics in scholarship, teaching, learning and research

The introduction of metrics, league tables, performance targets, research assessment exercises and a range of other pressures placed by society, funding bodies and employers on scholars, teachers and students have resulted in diminished value being placed on the essential ethical criterion of truth. The impact of reduced valuation for truth has a huge impact on the standing of science and not least horticultural science in the eyes of the general public at a time when this should be a primary concern. This contribution discusses examples of the impact of diminished valuation of truth, the causes of this phenomenon, the results that come from this situation and remedies that are needed.

Construction of ethics in clinical research - Clinical trials registration

Scientific development that has been achieved through decades finds in clinical research a great possibility of translating findings to human health application. Evidence given by clinical trials allows everyone to have access to the best health services. However, the millionaire world of pharmaceutical industries has stained clinical research with doubt and improbability. Study results (fruits of controlled clinical trials) and scientific publications (selective, manipulated and with wrong conclusions) led to an inappropriate clinical practice, favoring the involved economic aspect. In 2005, the International Committee of Medical Journal Editors (ICMJE), supported by the World Association of Medical Editors, started demanding as a requisite for publication that all clinical trials be registered at the database ClinicalTrials.gov. In 2006, the World Health Organization (WHO) created the International Clinical Trial Registry Platform (ICTRP), which gathers several registry centers from all over the world, and required that all researchers and pharmaceutical industries register clinical trials. Such obligatory registration has progressed and will extend to all scientific journals indexed in all worldwide databases. Registration of clinical trials means another step of clinical research towards transparency, ethics and impartiality, resulting in real evidence to the forthcoming changes in clinical practice as well as in the health situation.

Ethics in science: enhancing the democratisation of knowledge production in transdisciplinary research partnerships for sustainable development

Better access to knowledge and knowledge production has to be reconsidered as key to successful individual and social mitigation and adaptation strategies for global change. Indeed, concepts of sustainable development imply a transformation of science towards fostering democratisation of knowledge production and the development of knowledge societies as a strategic goal. This means to open the process of scientific knowledge production while simultaneously empowering people to implement their own visions for sustainable development. Advocates of sustainability science support this transformation. In transdisciplinary practice, they advance equity and accountability in the access to and production of knowledge at the science–society interface. UNESCO points to advancements, yet Northern dominance persists in knowledge production as well as in technology design and transfer. Further, transdisciplinary practice remains experimental and hampered by inadequate and asymmetrically equipped institutions in the North and South and related epistemological and operational obscurity. To help identify clear, practicable transdisciplinary approaches, I recommend examining the institutional route – i.e., the learning and adaptation process – followed in concrete cases. The transdisciplinary Eastern and Southern Africa Partnership Programme (1998–2013) is a case ripe for such examination. Understanding transdisciplinarity as an integrative approach, I highlight ESAPP’s three key principles for a more democratised knowledge production for sustainable development: (1) integration of scientific and “non-scientific” knowledge systems; (2) integration of social actors and institutions; and (3) integrative learning processes. The analysis reveals ESAPP’s achievements in contributing to more democratic knowledge production and South ownership in the realm of sustainable development.

The ethics of paying drug users who participate in research: a review and practical recommendations

THE PAYMENT OF RESEARCH PARTICIPANTS raises ethical and empirical questions that have special importance in addictions research involving drug-dependent participants. Despite a now large literature on human subjects payment, what is still needed is practical guidance for investigators and ethics committees. This paper reviews the literature on: current payment practices and guidelines; defining features of undue and due incentives and fair reimbursement; and the significance of risks and harms that may arise from paying drug using participants. We conclude that research payments are ethically acceptable in most circumstances of addictions research, but should be closely scrutinized in situations where these may exacerbate existing harms or create additional risks for participants and investigators. General principles, key questions and procedural options are highlighted for an applied approach to ethical research payments. Future research directions are identified.

Curriculum development for professional ethics in Australian human service university programmes

Australian academics and practitioners in the human services are particularly susceptible to social, political and economic influences in respect of their relevance, viability and operations. In fact, it can be argued that the impact of these influences has placed human service practitioners and academics in a perpetual state of vulnerability. Australian universities have been challenged to make their programmes more relevant and viable to the community at large, and practitioners face increasing workloads with limited resources based on restricted fiscal allocation, and the changing relationship between government and service providers. Drawing on interview data from twenty-one (n = 21) practitioners, this article highlights their identified problems regarding the notion of professionalism in the human services with a particular focus on ethical dilemmas in human service practice. Gleaning these details will be a basis for recommending necessary professionalethics curricula content in human services programmes offered in Australian universities. Moreover, while the research data is Australian based, the authors contend that the universal theories and principles underpinning human service practice justify the significance and value of the data as an important source for international consideration in curriculum development of human service academic programmes.