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Genetics Research International
Volume 2012 (2012), Article ID 946032, 6 pages
Review Article

Adolescents, Graduated Autonomy, and Genetic Testing

152 Paradise Rd., Golden, Colorado 80401, USA

Received 8 August 2011; Revised 14 November 2011; Accepted 11 December 2011

Academic Editor: Andrea Vicini

Copyright © 2012 Susan Fox. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Linked References

  1. D. C. Wertz, J. H. Fanos, and P. R. Reilly, “Genetic testing for children and adolescents: who decides?” Journal of the American Medical Association, vol. 272, no. 11, pp. 875–881, 1994. View at Publisher · View at Google Scholar
  2. L. Goossens, “The many faces of adolescence and autonomy: parent-adolescent conflict, behavioral decision-making and emotional distancing,” in Handbook of Adolescent Development, S. Jackson and L. Goossens, Eds., pp. 135–155, Psychological Press, New York, NY, USA, 2006. View at Google Scholar
  3. L. Wray-Lake, A. C. Crouter, and S. M. McHale, “Developmental patterns in decision-making autonomy across middle childhood and adolescence: European american parents' perspectives,” Child Development, vol. 81, no. 2, pp. 636–651, 2010. View at Publisher · View at Google Scholar · View at PubMed
  4. D. Friedman, C. DeLucia, G. N. Holmbeck, B. Jandasek, and K. Zebracki, “Trajectories of autonomy development across the adolescent transition in children with spina bifida,” Rehabilitation Psychology, vol. 54, no. 1, pp. 16–27, 2009. View at Publisher · View at Google Scholar
  5. L. Steinberg, Adolescence, McGraw-Hill, Boston, Mass, USA, 6th edition, 2002.
  6. H. D. Grotevant and C. R. Cooper, “Patterns of interaction in family relationships and the development of identity exploration in adolescence,” Child Development, vol. 56, no. 2, pp. 415–428, 1985. View at Google Scholar
  7. B. Soenens, M. Vansteenkiste, W. Lens et al., “Conceptualizing parental autonomy support: adolescent perceptions of promotion of independence versus promotion of volitional functioning,” Developmental Psychology, vol. 43, no. 3, pp. 633–646, 2007. View at Publisher · View at Google Scholar · View at PubMed
  8. V. A. Miller and R. M. Nelson, “A developmental approach to child assent for nontherapeutic research,” Journal of Pediatrics, vol. 149, no. 1, supplement, pp. S25–S30, 2006. View at Publisher · View at Google Scholar · View at PubMed
  9. T. L. Kuther, “Medical decision-making and minors: issues of consent and assent,” Adolescence, vol. 38, no. 150, pp. 343–358, 2003. View at Google Scholar
  10. A. Kohrman, E. W. Clayton, J. E. Frader, M. A. Grodin, K. L. Moseley, and I. H. Porter, “Informed consent, parental permission, and assent in pediatric practice,” Pediatrics, vol. 95, no. 2, pp. 314–317, 1995. View at Google Scholar
  11. Regulations Regarding the Protection of Human Subjects (2009), 45 C.F.R. Sec. 46.402 (b) (Assent’ means a child’s affirmative agreement to participate in research. Mere failure to object should not, absent affirmative agreement, be construed as assent.) and 45 C.F.R. Sec. 4.408 (a).
  12. R. M. Wehbe, G. A. Spiridigliozzi, E. M. Heise, D. V. Dawson, and A. McConkie-Rosell, “When to tell and test for genetic carrier status: perspectives of adolescents and young adults from fragile X families,” American Journal of Medical Genetics, Part A, vol. 149, no. 6, pp. 1190–1199, 2009. View at Publisher · View at Google Scholar · View at PubMed
  13. O. Järvinen, A.-E. Lehesjoki, M. Lindlöf, A. Uutela, and H. Kääriäinen, “Carrier testing of children for two X-linked diseases: a retrospective evaluation of experience and satisfaction of subjects and their mothers,” Genetic Testing, vol. 3, no. 4, pp. 347–355, 1999. View at Google Scholar
  14. C. A. James, N. A. Holtzman, and D. W. Hadley, “Perceptions of reproductive risk and carrier testing among adolescent sisters of males with chronic granulomatous disease,” American Journal of Medical Genetics - Seminars in Medical Genetics, vol. 119, no. 1, pp. 60–69, 2003. View at Google Scholar
  15. P. Borry, G. Evers-Kiebooms, M. C. Cornel, A. Clarke, and K. Dierickx, “Genetic testing in asymptomatic minors: background considerations towards ESHG Recommendations,” European Journal of Human Genetics, vol. 17, no. 6, pp. 711–719, 2009. View at Publisher · View at Google Scholar · View at PubMed
  16. British Medical Association, Consent, Rights and Choices in Health Care for Children and Young People, BMJ Books, London, UK, 2001.
  17. D. A. Murphy et al., “The dynamics between dependency and autonomy: illustrations across the life span,” in Life Span Development and Behavior, D. L. Featherman, R. M. Lerner, and M. Perlmutter, Eds., vol. 12, pp. 41–91, Lawrence Erlbaum Associates, Hillsdale, NJ, USA, 1994. View at Google Scholar
  18. United Nations, “Convention on the Rights of the Child,” 1989,
  19. Council of Europe, “Convention on Human Rights and Biomedicine,” Oviedo, 1997,