Children's competence for assent and consent: A review of empirical findings

Ethics and Behavior

Volumn 14, Issue 3, 2004, Pages 255-295

  Miller, Victoria A ^a   Drotar, Dennis ^a   Kodish, Eric ^b  

^a CASE WESTERN RESERVE UNIVERSITY   (United States)

^b CASE WESTERN RESERVE UNIVERSITY SCHOOL OF MEDICINE   (United States)

Author keywords

Assent; Competence; Informed consent; Pediatrics; Research ethics

Indexed keywords

EID: 11844299018     PISSN: 10508422     EISSN: None     Source Type: Journal    
DOI: 10.1207/s15327019eb1403_3     Document Type: Review

References (56)

1. Abramovitch, R., Freedman, J., Henry, K., & Van Brunschot, M. (1995). Children's capacity to agree to psychological research: Knowledge of risks and benefits and voluntariness. Ethics & Behavior, 5, 25-48.
2. Abramovitch, R., Freedman, J., Thoden, K., & Nikolich, C. (1991). Children's capacity to consent to participation in psychological research: Empirical findings. Child Development, 62, 1100-1109.
3. Ambuel, B., & Rappaport, J. (1992). Developmental trends in adolescents' psychological and legal competence to consent to abortion. Law and Human Behavior, 16(2), 129-154.
4. Asheroft, R., Goodenough, T., Williamson, E., & Kent, J. (2003). Children's consent to research participation: Social context and personal experience invalidate fixed cutoff rules. American Journal of Bioethics, 3(4), 16-18.
5. Bartholome, W. G. ( 1989). A new understanding of consent in pediatrie practice: Consent, parental permission, and child assent. Pediatrie Annals, 18, 262-265.
6. Baylis, F., Downie, J., & Kenny, N. (1999). Children and decisionmaking in health research. IRB: A Review of Human Subjects Research, 21(4), 5-10.
7. Beauchamp, T. L., & Childress, J. F. (1994). Principles of biomedical ethics (4th ed.). New York: Oxford University Press.
8. Billick, S., Burgert, W., Friberg, G., Downer, A., & Bruni-Solhkhah, S. (2001). A clinical study of competency to consent to treatment in pediatrics. Journal of the American Academy of Psychiatry and the Law, 29, 298-302.
9. Billick, S., Edwards, J., Burgert, W., Serlen, J., & Bruni, S. (1998). A clinical study of competency in child psychiatric inpatients. Journal of the American Academy of Psychiatry and the Law, 26(4), 587-594.
10. Committee on Bioethics. (1998). Informed consent, parental permission, and assent in pediatrie practice. Journal of Child and Family Nursing, 1, 57-61.
11. Casimir, K., & Billick, S. (1994). Competency in adolescent inpatients. Bulletin of the American Academy of Psychiatry and the Law, 22(1), 19-29.
12. Dorn, L., Susman, E., & Fletcher, J. (1995). Informed consent in children and adolescents: Age, maturation, and psychological state. Journal of Adolescent Health, 16, 185-190.
13. Dornbusch, S. M., Carlsmith, J. M., Bushwell, S., Ritter, P. L., Leiderman, P. H., Hastorf, A. H., et al. (1985). Single parents, extended households, and the control of adolescents. Child Development, 56, 326-341.
14. Dornbusch, S. M., Ritter, P. L., Mont-Reynaud, R., & Chen, Z. (1990). Family decision-making and academic performance in a diverse high school population. Journal of Adolescent Research, 5, 143-160.
15. Drotar, D. (2000). Writing research reviews. In D. Drotar (Ed.), Handbook of research in pediatrie and clinical child psychology (pp. 375-394). New York: Kluwer.
16. Erlen, J. A. (1987). The child's choice: An essential component in treatment decisions. Children's Health Care, 15, 156-160.
17. Federal Policy for the Protection of Human Subjects, 45 C. F. R. § 46.408a (2001).
18. Fernandez, C. V. (2003). Context in shaping the ability of a child to assent to research. American Journal of Bioethics, 3(4), 29-30.
19. Fisher, C. B. (2003). A goodness-of-fit ethic for child assent to nonbeneficial research. American Journal of Bioethics, 3(4), 27-28.
20. Fogas, B., Oesterheld, J., & Shader, R. (2001). A retrospective study of children's perceptions of participation as clinical research subjects in a minimal risk study. Developmental and Behavioral Pediatrics, 22, 211-216.
21. Grisso, T., & Appelbaum, P. S. (1995). Comparison of standards for assessing patients' capacities to make treatment decisions. American Journal of Psychiatry, 152, 1033-1037.
22. Grisso, T., & Vierling, L. (1978). Minors' consent to treatment: A developmental perspective. Professional Psychology, 412-427.
23. Halpern-Felsher, B. L., & Cauffman, E. (2001). Costs and benefits of a decision: Decision-making competence in adolescents and adults. Applied Developmental Psychology, 22, 257-273.
24. Hurley, J., & Underwood, M. (2002). Children's understanding of their research rights before and after debriefing: Informed assent, confidentiality, and stopping participation. Child Development, 73, 132-143.
25. Institute of Medicine. (2004). The ethical conduct of clinical research involving children. Washington, DC: The National Academies Press.
26. Joffe, S. (2003). Rethink "affirmative agreement," but abandon "assent." American Journal of Bioethics, 3(4), 9-11.
27. Kaser-Boyd, N., Adelman, H., & Taylor, L. (1985). Minors' ability to identify risks and benefits of therapy. Professional Psychology: Research and Practice, 16, 411-417.
28. Kaser-Boyd, N., Adelman, H., Taylor, L., & Nelson, P. (1986). Children's understanding of risks and benefits of psychotherapy. Journal of Clinical Child Psychology, 15, 165-171.
29. Kodish, E. (2003). Informed consent for pediatrie research: Is it really possible? Journal of Pediatrics, 142, 89-90.
30. Kunin, H. (1997). Ethical issues in pediatrie life-threatening illness: Dilemmas of consent, assent, and communication. Ethics & Behavior, 7, 43-57.
31. Lewis, C. (1980). A comparison of minors' and adults' pregnancy decisions. American Journal of Orthopsychiatry, 50, 446-453.
32. Lewis, C. (1981), How adolescents approach decisions: Changes over grades seven to twelve and policy implications. Child Development, 52, 538-544.
33. Liprie, M. L. (1993). Adolescents' contributions to family decision making. Marriage and Family Review, 18, 241-253.
34. McCabe, M. A. (1996). Involving children and adolescents in medical decision making: Developmental and clinical considerations. Journal of Pediatrie Psychology, 21, 505-516.
35. Melton, G. (1983). Decision making by children: Psychological risks and benefits. In G. B. Melton, G. P. Koocher, & M. J. Saks (Eds.), Children's competence to consent. New York: Plenum.
36. Miller, V. A., Drotar, D., Burant, C., & Kodish, E. (in press). Clinician-parent communication during informed consent for pediatrie leukemia trials. Journal of Pediatrie Psychology.
37. Mulvey, E., & Peeples, F. (1996). Are disturbed and normal adolescents equally competent to make decisions about mental health treatments? Law and Human Behavior, 20, 273-287.
38. Nannis, E. (1991). Children's understanding of their participation in psychological research: Implications for issues of assent and consent. Canadian Journal of Behavioral Science, 23, 133-141.
39. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont Report: Ethical principles and guidelines for the protection of human subjects of research. Washington, DC: U.S. Government Printing Office.
40. Ross, L. F. (1997). Health care decision making by children: Is it in their best interest? Hastings Center Report, 27(6), 41-45.
41. Scherer, D. (1991). The capacities of minors to exercise voluntariness in medical treatment decisions. Law and Human Behavior, 15, 431-449.
42. Scherer, D., & Reppucci, N. D. (1988). Adolescents' capacities to provide voluntary informed consent. Law and Human Behavior, 12, 123-141.
43. Siminoff, L. (1992). Improving communication with cancer patients. Oncology, 6(10), 83-89.
44. Stanley, B., Sieber, J., & Melton, G. (1987). Empirical studies of ethical issues in research: A research agenda. American Psychologist, 42, 735-741.
45. Sterling, C. M., & Walco, G. A. (2003). Protection of children's rights to self-determination in research. Ethics & Behavior, 13, 237-247.
46. Susman, E., Dorn, L., & Fletcher, J. (1992). Participation in biomedical research: The consent process as viewed by children, adolescents, young adults, and physicians. Journal of Pediatrics, 121, 547-552.
47. Tait, A. R., Voepel-Lewis, T., & Malviya, S. (2003). Do they understand? (Part II): Assent of children participating in clinical anesthesia and surgery research. Anesthesiology, 98, 609-614.
48. Urberg, K., & Rosen, R. (1987). Age differences in adolescent decision-making: Pregnancy resolution. Journal of Adolescent Research, 2, 447-454.
49. Weithorn, L. (1987). Informed consent for prevention research involving children: Legal and ethical issues. In J. A. Steinberg & M. M. Silverman (Eds.), Preventing mental disorders: A research perspective (pp. 226-242), Rockville, MD: National Institute of Mental Health.
50. Weithorn, L., & Campbell, S. (1982). The competency of children and adolescents to make informed treatment decisions. Child Development, 53, 1589-1598.
51. Weithorn, L. A. ( 1983). Involving children in decisions affecting their own welfare: Guidelines for professionals. In G. B. Melton, G. P. Koocher, & M. J. Saks (Eds.), Children's competence to consent. New York: Plenum.
52. Wendler, D., & Shah, S. (2003). Should children decide whether they are enrolled in nonbeneficial research? American Journal of Bloethics, 3(4), 1-7.
53. Wertz, D., Fanos, J., & Reilly, P. (1994). Genetic testing for children and adolescents: Who decides? Journal of the American Medical Association, 272, 875-881.
54. White, F. (1996). Parent-adolescent communication and adolescent decision-making. Journal of Family Studies, 2, 41-56.
55. Wills, T., Blechman, E., & McNamara, G. (1996). Family support, coping, and competence. In E. M. Hetherington & E. Blechman (Eds.), Stress, coping, and resiliency in children and families (pp. 107-133). Mahwah, NJ: Lawrence Erlbaum Associates, Inc.
56. Woolard, J. L., Reppucci, N. D., & Redding, R. E. (1996). Theoretical and methodological issues in studying children's capacities in legal contexts. Law and Human Behavior, 20, 219-228.