260
Views
12
CrossRef citations to date
0
Altmetric
Articles

Adolescent engagement during assent for exome sequencing

, , &

References

  • American Academy of Pediatrics Committee on Bioethics, Committee on Genetics, American College of Medical Genetics and Genomics Social, Ethical, and Legal Issues Committee. 2013. Ethical and policy issues in genetic testing and screening of children. Pediatrics 131(3): 620–22.
  • ACMG Board of Directors. 2015. ACMG policy statement: Updated recommendations regarding analysis and reporting of secondary findings in clinical genome-scale sequencing. Genetics in Medicine 17(1): 68–69.
  • Bandura, A. 2006. Toward a psychology of human agency. Perspectives on Psychological Science 1: 164–80.
  • Berg, J. S., M. J. Khoury, and J. P. Evans. 2011. Deploying whole genome sequencing in clinical practice and public health: Meeting the challenge one bin at a time. Genetics in Medicine 13(6): 499–504.
  • Bernhardt, B. A. 1997. Empirical evidence that genetic counseling is directive: where do we go from here?. American Journal of Human Genetics 60: 17–20.
  • Biesecker, L. G., and R. C. Green. 2014. Diagnostic clinical genome and exome sequencing. New England Journal of Medicine 371(12): 1170.
  • Botkin, J. R., J. W. Belmont, J. S. Berg, et al. 2015. Points to consider: Ethical, Legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics 97(1): 6–21.
  • Brody, J. L., R. D. Annett, D. G. Scherer, M. L. Perryman, and K. M. Cofrin. 2005. Comparisons of adolescent and parent willingness to participate in minimal and above-minimal risk pediatric asthma research protocols. Journal of Adolescent Health 37(3): 229–35.
  • Brody, J. L., R. D. Annett, D. G. Scherer, C. Turner, and J. Dalen. 2009. Enrolling adolescents in asthma research: Adolescent, parent, and physician influence in the decision-making process. Journal of Asthma 46(5): 492–97.
  • Brody, J. L., D. G. Scherer, R. D. Annett, and M. Pearson-Bish. 2003. Voluntary assent in biomedical research with adolescents: A comparison of parent and adolescent views. Ethics and Behavior 13(1): 79–95.
  • Brody, J. L., D. G. Scherer, R. D. Annett, C. Turner, and J. Dalen. 2006. Family and physician influence on asthma research participation decisions for adolescents: The effects of adolescent gender and research risk. Pediatrics 118(2): e356–62.
  • Broome, M. E., and D. J. Richards. 2003. The influence of relationships on children's and adolescents' participation in research. Nursing Research 52(3): 191–97.
  • Burke, W., A. H. M. Antommaria, R. Bennett, et al. 2013. Recommendations for returning genomic incidental findings? We need to talk!. Genetics in Medicine 15(11): 854–59.
  • Cegala, D. J., and S. L. Broz. 2002. Physician communication skills training: A review of theoretical backgrounds, objectives and skills. Medical Education 36(11): 1004–16.
  • Charmaz, K. 2006. Constructing grounded theory: A practical guide through qualitative analysis. London, UK: Sage.
  • Cohen, L. L., M. Stolerman, C. Walsh, D. Wasserman, and S. M. Dolan. 2014. Challenges of genetic testing in adolescents with cardiac arrhythmia syndromes. Journal of Medical Ethics 38(2): 163–67.
  • Committee on Adolescence. 2008. Achieving quality health services for adolescents. Pediatrics 121(6): 1263–70.
  • Cox, E. D., M. A. Smith, R. L. Brown, and M. A. Fitzpatrick. 2009. Learning to participate: Effect of child age and parental education on participation in pediatric visits. Health Communication 24(3): 249–58.
  • Downing, N. R., J. K. Williams, S. Daack-Hirsch, M. Driessnack, and C. M. Simon. 2013. Genetics specialists' perspectives on disclosure of genomic incidental findings in the clinical setting. Patient Education and Counseling 90(1): 133–38.
  • Duncan, R. E., and M. A. Young. 2012. Tricky teens: Are they really tricky or do genetic health professionals simply require more training in adolescent health?. Personalized Medicine 10(6): 589–600.
  • Edwards, A., J. Gray, A. Clarke, et al. 2008. Interventions to improve risk communication in clinical genetics: Systematic review. Patient Education and Counseling 71(1): 4–25.
  • Etchegary, H., D. Pullman, C. Simmonds, T. L. Young, and K. Hodgkinson. 2014. “It had to be done”; Genetic testing decisions for arrhythmogenic right ventricular cardiomyopathy. Clinical Genetics 88(4): 344–51.
  • Geller, G., E. S. Tambor, B. A. Bernhardt, G. Fraser, and L. S. Wissow. 2003. Informed consent for enrolling minors in genetic susceptibility research: A qualitative study of at-risk children's and parents' views about children's role in decision-making. Journal of Adolescent Health 32(4): 260–71.
  • Giesbertz, N., A. L. Bredenoord, and J. M. van Delden. 2014. Clarifying assent in pediatric research. European Journal of Human Genetics 22(2): 266–69.
  • Grady, C., L. Wiener, E. Abdoler, et al. 2014. Assent in research: The voices of adolescents. Journal of Adolescent Health 54(5): 515–20.
  • Green, R. C., J. S. Berg, W. W. Grody, et al. 2013. ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Genetics in Medicine 15(7): 565–74.
  • Harrison, C. 2010. Truth telling in pediatrics: What they don't know might hurt them. In Pediatric bioethics, ed. G. Miller, 73–86. New York, NY: Cambridge University Press.
  • Joffe, S. 2003. Rethink ‘affirmative agreement,’ but abandon ‘assent.’. American Journal of Bioethics 3(4): 9–11.
  • Knopf, J. M., R. W. Hornung, G. B. Slap, R. F. DeVellis, and M. T. Britto. 2008. Views of treatment decision making from adolescents with chronic illnesses and their parents: A pilot study. Health Expectations 11(4): 343–54.
  • Levetown, M. 2008. Communicating with children and families: From everyday interactions to skill in conveying distressing information. Pediatrics 121(5): e1441–60.
  • Lipstein, E. A., K. A. Muething, C. M. Dodds, and M. T. Britto. 2013. ‘I'm the one taking it’: Adolescent participation in chronic disease treatment decisions. Journal of Adolescent Health 53(2): 253–59.
  • Lucassen, A., G. Widdershoven, S. Metselaar, A. Fenwick, and M. Parker. 2014. Genetic testing of children: The need for a family perspective. American Journal of Bioethics 14(3): 26–28.
  • McCabe, M. A. 1996. Involving children and adolescents in medical decision making: Developmental and clinical considerations. Journal of Pediatric Psychology 21: 505–16.
  • McCarney, R., J. Warner, S. Iliffe, R. van Haselen, M. Griffin, and P. Fisher. 2007. The Hawthorne Effect: A randomised, controlled trial. BMC Medical Research Methodology 7: 30.
  • McGuire, A. L., and L. M. Beskow. 2010. Informed consent in genomics and genetic research. Annual Review of Genomics and Human Genetics 11: 361–81.
  • Miller, V. A., J. N. Baker, A. C. Leek, D. Drotar, and E. Kodish. 2014. Patient involvement in informed consent for pediatric phase I cancer research. Journal of Pediatric Hematology/Oncology 36(8): 635–40.
  • Miller, V. A., D. Drotar, and E. Kodish. 2004. Children's competence for assent and consent: A review of empirical findings. Ethics and Behavior 14(3): 255–95.
  • Miller, V. A., and R. M. Nelson. 2005. Moving beyond the consent cocument in research on informed consent. Archives of Pediatrics and Adolescent Medicine 159(4): 396–97.
  • Miller, V. A., W. W. Reynolds, and R. M. Nelson. 2008. Parent–child roles in decision making about medical research. Ethics and Behavior 18(2–3): 161–81.
  • Olechnowicz, J. Q., M. Eder, C. Simon, S. Zyzanski, and E. Kodish. 2002. Assent observed: Children's involvement in leukemia treatment and research discussions. Pediatrics 109(5): 806–14.
  • Ormondroyd, E., S. Oates, M. Parker, E. Blair, and H. Watkins. 2014. Presymptomatic genetic testing for inherited cardiac conditions: A qualitative exploration of psychosocial and ethical implications. European Journal of Human Genetics 22: 88–93.
  • Paul, J., S. Metcalfe, L. Stirling, B. Wilson, and J. Hodgson. 2015. Analyzing communication in genetic consultations-a systematic review. Patient Education and Counseling 98(1): 15–33.
  • Ross, L. F., H. M. Saal, K. L. David, and R. R. Anderson. 2013. Technical report: Ethical and policy issues in genetic testing and screening of children. Genetics in Medicine 15(3): 234–45.
  • Scherer, D. G., J. L. Brody, R. D. Annett, C. T. J. Dalen, and Y. Yoon. 2013. Empirically-derived knowledge on adolescent assent to pediatric biomedical research. AJOB Primary Research 4(3): 15–26.
  • Silverstein, L. B., M. Stolerman, N. Hidayatallah, et al. 2014. Translating advances in cardiogenetics into effective clinical practive. Qualitative Health Research 24(10): 1315–28.
  • Snethen, J. A., M. E. Broome, K. Knafl, J. A. Deatrick, and D. B. Angst. 2006. Family patterns of decision-making in pediatric clinical trials. Research in Nursing and Health 29(3): 223–32.
  • Tates, K., L. Meeuwesen, J. Bensing, and E. P. Elbers. 2002. Joking or decision-making? Affective and instrumental behaviour in doctor-parent-child communication. Psychology and Health 17: 281–95.
  • Tuchman, L. K., G. B. Slap, and M. T. Britto. 2008. Transition to adult care: Experiences and expectations of adolesents with a chronic illness. Child: Care, Health and Development 34(5): 557–63.
  • van Staa, A., and On Your Own Feet Research Group. 2011. Unraveling triadic communication in hospital consultations with adolescents with chronic conditions: The added value of mixed methods research. Patient Education and Counseling 82(3): 455–64.
  • Van Dulmen, A. M. 1998. Children's contributions to pediatric outpatient encounters. Pediatrics 102(3): 563–68.
  • Wassmer, E., G. Minnaar, N. Abdel Aal, et al. 2004. How do paediatricians communicate with children and parents? Acta Paediatrica 93(11): 1501–6.
  • Wilfond, B. S., and D. S. Diekema. 2012. Engaging children in genomics research: Decoding the meaning of assent in research. Genetics in Medicine 14: 437–43.
  • World Health Organization, World Psychiatric Association, and International Association for Child, Adolescent Psychiatry, and Allied Professions. 2005. Atlas: Child and adolescent mental health resources: Global concerns, implications for the future. Geneva, Switzerland: World Health Organization.
  • Wyatt, K. D., G. P. Lopez, J. P. D. Garces, et al. 2013. Study protocol: A systematic review of pediatric shared decision making. Systematic Reviews 2: 48.
  • Young, A. J., L. Kim, S. Li, et al. 2010. Agency and communication challenges in discussions of informed consent in pediatric cancer research. Qualitative Health Research 20(5): 628–43.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.