Split views among parents regarding children's right to decide about participation in research: A questionnaire survey

Journal of Medical Ethics

Volumn 35, Issue 7, 2009, Pages 450-455

  Swartling, U ^a   Helgesson, G ^b   Hansson, M G ^c   Ludvigsson, J ^a  

^a LINKÖPING UNIVERSITY   (Sweden)

^b KAROLINSKA INSTITUTE   (Sweden)

^c UPPSALA UNIVERSITY   (Sweden)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; ARTICLE; CHILD; CHILD ADVOCACY; CHILD PARENT RELATION; DECISION MAKING; ETHICS; HUMAN; INFORMED CONSENT; LONGITUDINAL STUDY; MIDDLE AGED; PATIENT SELECTION; PSYCHOLOGICAL ASPECT; QUESTIONNAIRE; REFUSAL TO PARTICIPATE; RESEARCH; RESEARCH SUBJECT; SWEDEN;

ADULT; AGED; AGED, 80 AND OVER; CHILD; CHILD ADVOCACY; DECISION MAKING; HUMANS; INFORMED CONSENT; LONGITUDINAL STUDIES; MIDDLE AGED; PARENT-CHILD RELATIONS; PATIENT SELECTION; QUESTIONNAIRES; REFUSAL TO PARTICIPATE; RESEARCH; RESEARCH SUBJECTS; SWEDEN; YOUNG ADULT;

EID: 72449125173     PISSN: 03066800     EISSN: 14734257     Source Type: Journal    
DOI: 10.1136/jme.2008.027383     Document Type: Article

References (24)

1. Johnson GL, Nelson RM. Informed consent and assent in human subject research. J Public Health Management Practice 2000;6:9-18.
2. American Academy of Pediatrics Committee on Bioethics, Informed consent, parental permission, and assent in pediatric patients. Pediatrics 1995;95:314-17.
3. Bartholomew W. Ethical issues in pediatric research. In: Vanderpool HY, ed. The ethics of research involving human subjects. Frederick, MD: University Publishing Group, 1996:360-1.
4. Berg JW, Appelbaum PS, Lidz CW, et al. Informed consent: Legal theory and clinical practice. Oxford: Oxford University Press, 2001.
5. Diekema DS. Taking children seriously: What's so important with asssent? Am J Bioethics 2003;3:25-6.
6. Miller VA, Drotar D, Kodish E. Children's competence for assent and consent: a review of empirical findings. Ethics Behav 2004;14:255-295.
7. Rossi WC, Reynolds W, Nelson RM. Child assent and parental permission in pediatric research. Theor Med Bioeth 2003;24:131-148.
8. Alderson P, Montgomery J. Health care choices. Making decisions with children. London: IPPR, 1996.
9. Alderson P, Sutcliffe K, Curtis K. Children's competence to consent for medical treatment. Hastings Cent Rept 2006;36:25-34.
10. European Union - EC. Clinical Trials Directive (Directive 2001/20/EC). 2001. Directive 2001/83/EC of the European Parliament and of the Council of 6 November 2001 on the Community code relating to medicinal products for human use (Official Journal L 311, 28/11/2001; 67-128).
11. The National Commission for the protection of Human Subjects of Biomedical and Behavioral Research. Research involving children: Report and recommendations. DHEW Pub. No (OS) 77-0004. Washington: GPO, 1977.
12. European Parliament. Towards an EU strategy on the rights of the child (2007/2093(INI). P6_TA(2008)0012.16 January 2008.
13. Wendler D, Shah S. Should children decide whether they are enrolled in nonbeneficial research? Am J Bioeth 2003;3:1-7.
14. King NMP, Cross AW. Children as decision makers: Guidelines for pediatricians. Journal of Pediatrics 1989;115:10-16.
15. Miller V, Nelson RM. A developmental approach to child assent for nontherapeuticresearch. J Pediatr 2006;149(suppl):s25-30.
16. Swartling U, Helgesson G, Hansson MG, et al. Parental authority, research interestsand children's right to decide in medical research - an uneasy tension? Clin Ethics 2008;7:69-74
17. Swartling U, Helgesson G. Self-assessed understanding as a tool for evaluatingconsent: reflections on a longitudinal study. J Med Ethics 2008;34:557-562
18. Helgesson G, Swartling U. Views on data use, confidentiality and consent in apredictive screening involving children. J Med Ethics 2008;34:206-209
19. Helgesson G, Hansson MG, Ludvigsson L, et al. Practical matters, rather than lack oftrust, motivate non-participation in a long-term cohort trial. Pediat Diabetes 2009 (inpress).
20. Swartling U, Eriksson S, Ludvigsson J, et al. Concern, pressure and lack ofknowledge affect choice of not wanting to know high-risk status. Eur J HumGenet2007;15:556-62.
21. Helgesson G. Children, longitudinal studies, and informed consent. Med Health CarePhilos 2005;8:307-13.
22. United Nations convention on the rights of the child. 77-0004 &5. New York:UNICEF, 1989.
23. World Medical Association. Declaration of Helsinki. Fernay Voltaire: WMA, 1964/2000.
24. O'Neill O. Some limits of informed consent. J Med Ethics 2003;29:4-7.