Literature DB >> 16283493

Children, longitudinal studies, and informed consent.

Gert Helgesson1.   

Abstract

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 children be handled? A general point stressed is that autonomy considerations underline the importance of adjusting the information given to meet demands. A "presumption of competence" may be needed in research involving children, in order to pay their views sufficient attention.

Entities:  

Keywords:  Biomedical and Behavioral Research

Mesh:

Year:  2005        PMID: 16283493     DOI: 10.1007/s11019-005-0978-4

Source DB:  PubMed          Journal:  Med Health Care Philos        ISSN: 1386-7423


  9 in total

1.  Should children decide whether they are enrolled in nonbeneficial research?

Authors:  David Wendler; Seema Shah
Journal:  Am J Bioeth       Date:  2003       Impact factor: 11.229

2.  'Science is really needed--that's all I know': informed consent and the non-verbal practices of collecting blood for genetic research in northern Sweden.

Authors:  Klaus Hoeyer
Journal:  New Genet Soc       Date:  2003-12

3.  Genetic Privacy: A Challenge to Medico-Legal Norms.

Authors:  Stephanie L. Anderson
Journal:  J Leg Med       Date:  2004

4.  ALSPAC--the Avon Longitudinal Study of Parents and Children. I. Study methodology.

Authors:  J Golding; M Pembrey; R Jones
Journal:  Paediatr Perinat Epidemiol       Date:  2001-01       Impact factor: 3.980

5.  Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine: convention on human rights and biomedicine (adopted by the Committee of Ministers on 19 November 1996). Council of Europe Convention of Biomedicine.

Authors: 
Journal:  Hum Reprod       Date:  1997-09       Impact factor: 6.918

6.  Child assent and parental permission in pediatric research.

Authors:  Wilma C Rossi; William Reynolds; Robert M Nelson
Journal:  Theor Med Bioeth       Date:  2003

7.  The ethics of type 1 diabetes prediction and prevention research.

Authors:  Lainie Friedman Ross
Journal:  Theor Med Bioeth       Date:  2003

8.  Empirical examination of the ability of children to consent to clinical research.

Authors:  N Ondrusek; R Abramovitch; P Pencharz; G Koren
Journal:  J Med Ethics       Date:  1998-06       Impact factor: 2.903

9.  Some limits of informed consent.

Authors:  O O'Neill
Journal:  J Med Ethics       Date:  2003-02       Impact factor: 2.903

  9 in total
  12 in total

1.  Regulating biobanking with children's tissue: a legal analysis and the experts' view.

Authors:  Elcke J Kranendonk; M Corrette Ploem; Raoul C M Hennekam
Journal:  Eur J Hum Genet       Date:  2015-04-15       Impact factor: 4.246

2.  Pediatric Issues in Return of Results and Incidental Findings: Weighing Autonomy and Best Interests.

Authors:  Ingrid A Holm
Journal:  Genet Test Mol Biomarkers       Date:  2017-01-31

Review 3.  Reconsidering the Need for Reconsent at 18.

Authors:  Benjamin E Berkman; Dana Howard; David Wendler
Journal:  Pediatrics       Date:  2018-07-06       Impact factor: 7.124

Review 4.  Children and biobanks: a review of the ethical and legal discussion.

Authors:  Kristien Hens; Emmanuelle Lévesque; Kris Dierickx
Journal:  Hum Genet       Date:  2011-06-10       Impact factor: 4.132

5.  Children, biobanks and the scope of parental consent.

Authors:  Kristien Hens; Jean-Jacques Cassiman; Herman Nys; Kris Dierickx
Journal:  Eur J Hum Genet       Date:  2011-03-09       Impact factor: 4.246

6.  Empirically-derived Knowledge on Adolescent Assent to Pediatric Biomedical Research.

Authors:  David G Scherer; Janet L Brody; Robert D Annett; Charles Turner; Jeanne Dalen; Yesel Yoon
Journal:  AJOB Prim Res       Date:  2013

7.  Behavioral Science Research Informs Bioethical Issues in the Conduct of Large-Scale Studies of Children's Disease Risk.

Authors:  Kenneth P Tercyak; Ulrica Swartling; Darren Mays; Suzanne Bennett Johnson; Johnny Ludvigsson
Journal:  AJOB Prim Res       Date:  2013-01-01

8.  Developing a policy for paediatric biobanks: principles for good practice.

Authors:  Kristien Hens; Carla E Van El; Pascal Borry; Anne Cambon-Thomsen; Martina C Cornel; Francesca Forzano; Anneke Lucassen; Christine Patch; Lisbeth Tranebjaerg; Eric Vermeulen; Elena Salvaterra; Aad Tibben; Kris Dierickx
Journal:  Eur J Hum Genet       Date:  2012-06-20       Impact factor: 4.246

9.  Personalized assent for pediatric biobanks.

Authors:  Noor A A Giesbertz; Karen Melham; Jane Kaye; Johannes J M van Delden; Annelien L Bredenoord
Journal:  BMC Med Ethics       Date:  2016-10-12       Impact factor: 2.652

10.  Identifying Ethical Issues in Mental Health Research with Minors Adolescents: Results of a Delphi Study.

Authors:  Elisabeta Ioana Hiriscau; Nicola Stingelin-Giles; Danuta Wasserman; Stella Reiter-Theil
Journal:  Int J Environ Res Public Health       Date:  2016-05-11       Impact factor: 3.390

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