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.
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References
P. Alderson (2000) Young Children’s Rights. Exploring Beliefs. Principles and Practice Jessica Kingsley Publishers London & Philadelphia
P. Alderson J. Montgomery (1996) Health Care Choices. Making Decisions with Children IPPR London
T. Beauchamp J. Childress (2001) Principles of Biomedical Ethics EditionNumber5 Oxford University Press Oxford
D. Brock (1993) Life and Death: Philosophical Essays in Biomedical Ethics Cambridge University Press Cambridge
B.A. Brody (1998) The Ethics of Biomedical Research: An International Perspective Oxford University Press Oxford
S. Clarke (2001) ArticleTitle‘Informed Consent in Medicine in Comparison with Consent in Other Areas of Human Activity’ The Southern Journal of Philosophy 39 169–187 Occurrence Handle10.1111/j.2041-6962.2001.tb01812.x
A. Clarke F. Flinter (1999) ‘The Genetic Testing of Children: A Clinical Perspective’ T. Marteau M. Richards (Eds) The Troubled Helix: Social and Psychological Implications of the New Human Genetics Cambridge University Press Cambridge 164–176
Council of Europe: 1997, 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. Oviedo.
Council of Europe: 1996, European Convention on the Exercise of Children’s Rights. Strasbourg.
R. Edwards P. Alldred (1999) ArticleTitle‘Children and Young People’s Views of Social Research. The Case of Research on Home–School Relations’ Childhood 6 IssueID2 261–281
R. Faden T. Beauchamp (1986) A History of Informed Consent Oxford University Press Oxford
L. Friedman Ross (2003) ArticleTitle‘The Ethics of Type 1 Diabetes Prediction and Prevention Research’ Theoretical Medicine and Bioethics 24 177–197
Golding, J., M. Pembrey, R. Jones and the ALSPAC Study Team: 2001, ‘ALSPAC – The Avon Longitudinal Study of Parents and Children 1. Study Methodology, Paediatric and Perinatal Epidemiology 15, 74–87.
T. Goodenough E. Williamson J. Kent R. Ashcroft (2003) ArticleTitle‘ “What Did You Think about That?” Researching Children’s Perceptions of Participation in a Longitudinal Genetic Epidemiological Study’ Children & Society 17 113–125 Occurrence Handle10.1002/chi.739
Gustafsson-Stolt U.: 2003, Aspects in Bioethics. Theory and Practice in a Preventive Screening for Type 1 Diabetes. Diss. Linköping University.
P.S. Harper A.J. Clarke (1987) Genetics, Society and Clinical Practice BIOS Scientific Publishers Oxford
K. Hoeyer (2003) ArticleTitle‘“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’ New Genetics and Society 22 229–244 Occurrence Handle10.1080/1463677032000147199 Occurrence Handle15115024
Lag (2003:460) om etikprövning av forskning som avser människor (Swedish Act on Ethical Review): 2003.
G. Laurie (2002) Genetic Privacy. A Challenge to Medico-Legal Norms Cambridge University Press Cambridge
S. Leikin (1996) ‘Ethical Issues in Epidemiologic Research with Children’ S. Coughlin T. Beauchamp (Eds) Ethics and Epidemiology Oxford University Press Oxford 199–218
V. Morrow M. Richards (1996) ArticleTitle‘The Ethics of Social Research with Children: An Overview’ Children & Society 10 90–105 Occurrence Handle10.1002/(SICI)1099-0860(199606)10:2<90::AID-CHI14>3.0.CO;2-Z
R.B. Miller (2003) Children, Ethics, and Modern Medicine Indiana University Press Bloomington
R.H. Nicholson (Eds) (1986) Medical Research with Children: Ethics, Law, and Practice Oxford University Press Oxford
N. Ondrusek R. Abramovitch P. Pencharz G. Koren (1998) ArticleTitle‘Empirical Examination of the Ability of Children to Consent to Clinical Research’ Journal of Medical Ethics 24 158–165 Occurrence Handle9650109 Occurrence Handle1:STN:280:DyaK1czhtlOqtw%3D%3D Occurrence Handle10.1136/jme.24.3.158
O. O’Neill (2003) ArticleTitle‘Some Limits of Informed Consent’ Journal of Medical Ethics 29 4–7 Occurrence Handle12569185 Occurrence Handle1:STN:280:DC%2BD3s%2FlvV2iuw%3D%3D
O. O’Neill (2002) Autonomy and Trust in Bioethics Cambridge University Press Cambridge
W. Rossi W. Reynolds R. Nelson (2003) ArticleTitle‘Child Assent and Parental Permission in Pediatric Research’ Theoretical Medicine and Bioethics 24 131–148 Occurrence Handle10.1023/A:1024690712019 Occurrence Handle12943268
A. Stafford A. Laybourn M. Hill M. Walker (2003) ArticleTitle‘“Having a Say”: Children and Young People Talk about Consultation’ Children & Society 17 361–373 Occurrence Handle10.1002/chi.758
Swedish Medical Research Council: 2000, Riktlinjer för etisk värdering av medicinsk humanforskning(Guideline for Ethical Evaluation of Medical Research Involving Human Subjects) (revised ed). Stockholm.
U.N.: 1989, Convention on the Rights of the Child.
D. Wendler S. Shah (2003) ArticleTitle‘Should Children Decide Whether They Are Enrolled in Nonbeneficial Research?’ American Journal of Bioethics 3 IssueID4 1–7 Occurrence Handle14744301
P. Wolpe (1998) ‘The Triumph of Autonomy in American Bioethics: A Sociological View’ R. DeVries J. Subedi (Eds) Bioethics and Society: Constructing the Ethical Enterprise Prentice-Hall Englewood Cliffs, N.J. 38–59
World Medical Association: 2000, Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects. Adopted by the 52nd WMA General Assembly, Edinburgh, Scotland.
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Helgesson, G. Children, Longitudinal Studies, and Informed Consent. Med Health Care Philos 8, 307–313 (2005). https://doi.org/10.1007/s11019-005-0978-4
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DOI: https://doi.org/10.1007/s11019-005-0978-4