Switch to: References

Add citations

You must login to add citations.
  1. Children, Longitudinal Studies, and Informed Consent.Gert Helgesson - 2005 - Medicine, Health Care and Philosophy 8 (3):307-313.
    This paper deals with ethical issues of particular relevance to longitudinal research involving children. First some general problems concerning information and lack of understanding are discussed. Thereafter focus is shifted to issues concerning information and consent procedures in studies that include young children growing up to become autonomous persons while the project still runs. Some of the questions raised are: When is it right to include children in longitudinal studies? Is an approval from the child needed? How should information to (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   5 citations  
  • Split Views Among Parents Regarding Children's Right to Decide About Participation in Research: A Questionnaire Survey.U. Swartling, G. Helgesson, M. G. Hansson & J. Ludvigsson - 2009 - Journal of Medical Ethics 35 (7):450-455.
    Based on extensive questionnaire data, this paper focuses on parents’ views about children’s right to decide about participation in research. The data originates from 4000 families participating in a longitudinal prospective screening as 1997. Although current regulations and recommendations underline that children should have influence over their participation, many parents in this study disagree. Most (66%) were positive providing information to the child about relevant aspects of the study. However, responding parents were split about whether or not children should at (...)
    Direct download (6 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  • A Questionnaire on Factors Influencing Children's Assent and Dissent to Non-Therapeutic Research.O. D. Wolthers - 2006 - Journal of Medical Ethics 32 (5):292-297.
    Background: Knowledge about assent or dissent of children to non-therapeutic research is poor.Objectives: To assess sociodemographic characteristics in healthy children and adolescents who were invited to participate in non-therapeutic research, to evaluate their motives for assent or dissent and their understanding of the information given.Methods: A total of 1281 healthy children and adolescents six to sixteen years of age were invited to participate in a non-therapeutic study and a questionnaire.Results: Assenting children were motivated by a desire to help sick children (...)
    Direct download (7 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  • Assent in Paediatric Research: Theoretical and Practical Considerations.D. S. Wendler - 2006 - Journal of Medical Ethics 32 (4):229-234.
    Guidelines around the world require children to provide assent for their participation in most research studies. Yet, little further guidance is provided on how review committees should implement this requirement, including which children are capable of providing assent and when the requirement for assent may be waived on the grounds that the research offers participating children the potential for important clinical benefit. The present paper argues that the assent requirement is supported by the importance of allowing children who are capable (...)
    Direct download (7 more)  
     
    Export citation  
     
    Bookmark   17 citations  
  • Assent and Dissent: Ethical Considerations in Research With Toddlers.Hallie R. Brown, Elizabeth A. Harvey, Shayl F. Griffith, David H. Arnold & Richard P. Halgin - 2017 - Ethics and Behavior 27 (8):651-664.
    In accordance with ethical principles and standards, researchers conducting studies with children are expected to seek assent and respect their dissent from participation. Little attention has been given to assent and dissent in research with toddlers, who have limited cognitive and emotional capabilities. We discuss research with toddlers in the context of assent and dissent and propose guidelines to ensure that research with toddlers still adheres to ethical principles. These guidelines include designing engaging studies, monitoring refusal and distress, and partnering (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  • Personalized assent for pediatric biobanks.Noor A. A. Giesbertz, Karen Melham, Jane Kaye, Johannes J. M. van Delden & Annelien L. Bredenoord - 2016 - BMC Medical Ethics 17 (1):59.
    Pediatric biobanking is considered important for generating biomedical knowledge and improving health care. However, the inclusion of children’s samples in biobanks involves specific ethical issues. One of the main concerns is how to appropriately engage children in the consent procedure. We suggest that children should be involved through a personalized assent procedure, which means that both the content and the process of assent are adjusted to the individual child. In this paper we provide guidance on how to put personalized assent (...)
    Direct download (8 more)  
    Translate
     
     
    Export citation  
     
    Bookmark  
  • Parents’ Attitudes Towards and Perceptions of Involving Minors in Medical Research From the Japanese Perspective.Yasue Fukuda & Koji Fukuda - 2018 - BMC Medical Ethics 19 (1):91.
    Children’s intentions should be respected. Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child’s consent and assent, approval, and decision-making are not clearly defined, which makes the process of obtaining consent and assent for clinical research complex. The purpose of this paper is as follows: to understand the attitudes and motives of parents concerning children’s participation in medical research and the factors influencing their decision-making. We also sought (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark  
  • Parental Authority, Research Interests and Children's Right to Decide in Medical Research–an Uneasy Tension?Ulrica Swartling, Gert Helgesson, Mats G. Hansson & Johnny Ludvigsson - 2008 - Clinical Ethics 3 (2):69-74.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • Development of a Consensus Operational Definition of Child Assent for Research.Alan R. Tait & Michael E. Geisser - 2017 - BMC Medical Ethics 18 (1):41.
    There is currently no consensus from the relevant stakeholders regarding the operational and construct definitions of child assent for research. As such, the requirements for assent are often construed in different ways, institutionally disparate, and often conflated with those of parental consent. Development of a standardized operational definition of assent would thus be important to ensure that investigators, institutional review boards, and policy makers consider the assent process in the same way. To this end, we describe a Delphi study that (...)
    Direct download (8 more)  
    Translate
     
     
    Export citation  
     
    Bookmark   1 citation  
  • Developing a New Justification for Assent.Amanda Sibley, Andrew J. Pollard, Raymond Fitzpatrick & Mark Sheehan - 2016 - BMC Medical Ethics 17 (1):1-9.
    BackgroundCurrent guidelines do not clearly outline when assent should be attained from paediatric research participants, nor do they detail the necessary elements of the assent process. This stems from the fact that the fundamental justification behind the concept of assent is misunderstood. In this paper, we critically assess three widespread ethical arguments used for assent: children’s rights, the best interests of the child, and respect for a child’s developing autonomy. We then outline a newly-developed two-fold justification for the assent process: (...)
    Direct download (7 more)  
     
    Export citation  
     
    Bookmark   8 citations  
  • A Randomized Study of a Method for Optimizing Adolescent Assent to Biomedical Research.Robert D. Annett, Janet L. Brody, David G. Scherer, Charles W. Turner, Jeanne Dalen & Hengameh Raissy - 2017 - Ajob Empirical Bioethics 8 (3):189-197.
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  • Neuroimaging Research with Children: Ethical Issues and Case Scenarios.Donna Coch - 2007 - Journal of Moral Education 36 (1):1-18.
    There are few available resources for learning and teaching about ethical issues in neuroimaging research with children, who constitute a special and vulnerable population. Here, a brief review of ethical issues in developmental research, situated within the emerging field of neuroethics, highlights the increasingly interdisciplinary nature of research with children. Traditional boundaries between behavioural, psychological, neuroscientific and educational research are being blurred by multidisciplinary studies of learning and human development. Developmental and educational researchers need to be aware of the ethical (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • A Goodness-of-Fit Approach to Informed Consent for Pediatric Intervention Research.Jessica Masty & Celia Fisher - 2008 - Ethics and Behavior 18 (2-3):139 – 160.
    As children and adolescents receive increased research attention, ethical issues related to obtaining informed consent for pediatric intervention research have come into greater focus. In this article, we conceptualize parent permission and child assent within a goodness-of-fit framework that encourages investigators to create consent procedures “fitted” to the research context, the child's cognitive and emotional maturity, and the family system. Drawing on relevant literature and a hypothetical case example, we highlight four factors investigators may consider when constructing consent procedures that (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   7 citations