Incentives for Children in Research

The Journal of Pediatrics, 2002

Journal of Pediatric Infection, 2017

This study presents an overview of the scientific and ethical issues pertaining to the most controversial areas of experimentation on humans (research with children subjects, risk/benefit estimation in paediatric research maturity of children to consent to medical research). Over the past decade, the questions regarding research ethics related to this issue have continuously evolved. The major objective of this paper is that each of these issues will continue to pose new ethical questions and mechanisms in relevant areas for ongoing considerations of these questions. It is essential that we are aware of the ethical issues in various paediatric research studies an continue to search for answers for the numerous ethical challenges, being aware of the vulnerability/defenselessness and capacity development of child participants.

Paediatric Care, 2009

Even young children can contribute to research if appropriate methods are used. Lisa Whiting reports and Jack Forbes (aged ten) gives his views Involving children in research From the United Nations Convention on the rights of the Child (1989) to the Healthy Lives, Brighter Futures strategy (Department of health (Dh) and Department for Children, Schools and Families (DCSF) 2009), there is overwhelming support for the involvement of children and young people in any decisions that may affect them. the requirement to take account of their views and experiences whenever possible is just as applicable to research as it is to any other initiative. Children's nurses who undertake research have a responsibility, wherever possible, to include children and young people in any study whose findings may have implications for them. this article explores some of the issues to be considered when conducting research with this client group with suggestions on how these can be addressed. Consistent use of terms Different terms and phrases are used in documents advocating children's involvement. the Department

Pediatric research, 2015

More pediatric drug trials are needed, but although specific pediatric regulations warrant safety, recruitment of children for these trials remains one of the main difficulties. Therefore we investigated potential determining factors of non-participation in clinical research, in order to optimize research participation of children by recommending improved recruitment strategies. Between January 1, 2012 and January 1, 2014, we performed a prospective study among161 pediatric patients, aged 6 to 18 years, who were eligible for clinical research. We quantitatively analyzed the association of potential explanatory variables (e.g., age, cognitive development, experience, ethnicity) with non-participation and qualitatively analyzed interviews on reasons for non-participation. 60% of the children did not participate in the research project on offer (39% decided not to participate, 21% were indecisive). Lower age, less disease experience, and less complex research with lower risk were predi...

2013

Even as research with children has increasingly been recognized as urgently needed for generating effective treatments for childhood diseases, drug formulations for infants and young children, and dosages appropriate for children, it has remained controversial. Scholars have engaged in heated debates over whether non-beneficial research with children is morally and legally justified. On one point, however, there has been agreement: Whether they support or criticize pediatric research, commentators generally assume that pediatric research should be justified under the “best interests of the child” legal standard. This assumption not only threatens important research and public health interventions, but it is also incorrect. This Article challenges conventional wisdom by arguing that research does not have to be in a child’s best interests to be legally permissible.The best interests standard is generally understood as the governing principle for legal decisions about children, partic...

This paper examines the rights of children as participants in university-based research projects. Human Ethics Committee policies from the eight New Zealand universities are compared to identify and address issues associated with the collection of informed consent, that is, when should researchers obtain parental or guardian consent before children can participate in a research project, and when is a child considered an adult. There are a number of issues that arise when dealing with children in research, particularly in disciplines such as medicine, where, for example, a guardian under certain circumstances can override a child's refusal. Whilst briefly discussing the medical discipline, the primary focus is on research undertaken in social sciences/humanities. To define 'participation' this paper draws on the work of Hart (1992, p.5) where participation is understood to refer to "the process of sharing decisions which affect one's life…". The decision...

Research Involvement and Engagement, 2021

Background A growing trend in research is to involve co-researchers. It is referred to as Patient and Public Involvement (PPI) and comprises three groups: the patients, the public, and the researchers. Like in adult public involvement, healthy children can also be considered as ‘the public’. Paediatric patients and researchers experienced in conducting child-inclusive research are often asked about their attitudes towards the challenges they encounter. This is not the case for healthy children and researchers without such experience. Our aim was to investigate the attitudes of these children and researchers towards the challenges encountered during child-inclusive research. Methods This was an exploratory study. We interviewed healthy children and adult researchers without prior experience in child-inclusive research. We recruited the children through a foundation for young researchers and the adult researchers from two hospitals, both in Groningen, the Netherlands. We audio recorde...

Upsala Journal of Medical Sciences, 2006

Children's participation in research is essential for the development of safe and ageappropriate treatments. However, children's participation is limited. The aim of this study was to determine (1) mothers' and fathers' views on which agencies/persons should evaluate the level of acceptable risk for children and (2) parents' willingness to allow children to participate in research. Medical factors, sociodemographics, and research attitudes were related to willingness. The study used a cross-sectional and longitudinal design with 863 expectant parents (435 women; 428 men) consecutively recruited at gestational week 19 during routine ultrasound examination at 2 hospitals in Uppsala County, Sweden. 123 women at gestational week 34 were followed-up.

Social Policy Report, 2013

F or the first time in twenty years the U.S. Department of Health and Human Services (DHHS, 2009) is considering changes to federal regulations governing research. The Common Rule provides the basis for government regulations and Institutional Review Boards (IRB). Proposed changes will have a significant impact on Institutional Review Board evaluation of research involving infants, children and adolescents. For example, such a revision can serve to rectify or exacerbate often observed IRB inconsistencies and over-estimation of probable harms when applying "minimal risk" or "exempt" criteria to research involving minors. Proposed revisions may also affect the feasibility of research on adolescent risk that requires waiver of parental or guardian permission to be successfully implemented. Further, recommendations for a new category of "informational risk" based on current and emerging advances in analysis and storage of bio-specimens and information technologies for archival research will have significant influence on ethical procedures required for collection and storage of longitudinal and cross-sectional data. Given the importance of any rule change to the conduct of science related to children, the Society for Research in Child Development (SRCD) convened the SRCD Task Force on Proposed Changes to the Common Rule. The purpose of this report is to alert policymakers, scientists, and participant groups to proposed changes most relevant to research involving children and to provide recommendations for ensuring the responsible conduct of child and adolescent research in the final regulatory changes.

Journal of Child Health Care, 2005