Oncofertility pp 249-258 | Cite as

Oncofertility and Informed Consent: Addressing Beliefs, Values, and Future Decision Making

Part of the Cancer Treatment and Research book series (CTAR, volume 156)


Imagine every parent’s nightmare… your sweet, vibrant daughter has just been diagnosed with cancer. The doctor is talking to you, but all you hear is “cancer” and all you can think about is the possibility that she may die. Now that the diagnosis is made, the doctor is anxious to begin treatment. He is describing the treatment, its benefits and burdens, and the schedule. Suddenly, though the “c-word” continues to buzz in your ears, you hear the side effects of treatment – hair loss, nausea, fatigue, weight loss, and infertility. “Infertility?! My baby may never be able to have babies?!” You have not yet processed the diagnosis, or come to terms with your child’s mortality, and now this.


Human Papilloma Virus Fertility Preservation Inform Consent Process Human Papilloma Virus Vaccine Ovarian Tissue Cryopreservation 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.



This research was supported by the oncofertility consortium NIH 8UL1DE019587, 5RL1HD058296.


  1. 1.
    Schloendorff V. Society of New York Hospitals, 211 N.Y. 2d (1914).Google Scholar
  2. 2.
    Kathleen G. Whose future is it? Ethical family decision making in the Oncofertility context. Proceedings of the 2nd Annual Oncofertility Summit, Chicago, July 2009.Google Scholar
  3. 3.
    Kodish ED, Pentz RD, Noll RB, Ruccione K, Buckley J, Lange BJ. Informed consent in the Childrens Cancer Group: results of preliminary research. Cancer. 1998; 82(12):2467–81.PubMedCrossRefGoogle Scholar
  4. 4.
    Fagerlin A, Lakhani I, Lantz PM, Janz NK, Morrow M, Schwartz K, Deapen D, Salem B, Liu L, Katz SJ. An informed decision? Breast cancer patients and their knowledge about treatment. Patient Educ Couns. 2006; 64(1–3):303–12, Epub July 24, 2006.PubMedCrossRefGoogle Scholar
  5. 5.
    Appelbaum PS, Roth LH, Lidz C. The therapeutic misconception: informed consent in psychiatric research. Int J Law Psychiatry. 1982; 5:319–29.PubMedCrossRefGoogle Scholar
  6. 6.
    Appelbaum PS, Lidz CW, Grisso T. Therapeutic misconception in clinical research: frequency and risk factors. IRB. 2004; 26:1–8.PubMedCrossRefGoogle Scholar
  7. 7.
    Lidz CW. The therapeutic misconception and our models of competency and informed consent. Behav Sci Law. 2006; 24:535–46.PubMedCrossRefGoogle Scholar
  8. 8.
    Childress JF, Siegler M. Metaphors and models of doctor-patient relationships: their implications for autonomy. Theor Med. 1984; 5:17–30.PubMedCrossRefGoogle Scholar
  9. 9.
    Barrett R. Quality of informed consent: measuring understanding among participants in oncology clinical trials. Oncol Nurs Forum. 2005; 32(4):751–5.PubMedCrossRefGoogle Scholar
  10. 10.
    Research Misconception, DeMarco JP, Markman M. The research misconception. Int J Appl Philos. 2004; 18(2):241–52.PubMedGoogle Scholar
  11. 11.
    American Academy of Pediatrics, Bioethics Committee, Informed Consent, Parental Permission, and Assent in Pediatric Practice, http://aappolicy.aappublications.org/cgi/content/short/pediatrics;95/2/314. Accessed September 24, 2009.
  12. 12.
    Halpern J. Let’s value but not idealize, emotions. J Clin Ethics. 2007; 18(4):380–3.PubMedGoogle Scholar
  13. 13.
    Noakes K, Yarwood J, Salisbury D. Parental response to the introduction of a vaccine against human papilloma virus. Hum Vaccin. 2006; 2(6):243–8.PubMedCrossRefGoogle Scholar
  14. 14.
    Laura Bell, What happens to extra embryos after IVF?” CNN.com, http://www.cnn.com/2009/HEALTH/09/01/extra.ivf.embryos/index.html?iref=newssearch. Accessed September 14, 2009.
  15. 15.
    BBC News Online, Q&A Frozen sperm, May 25, 2004, http://news.bbc.co.uk/2/hi/health/3745085.stm. Accessed September 1, 2009.
  16. 16.
    Ethics Committee of the American Society for Reproductive Medicine. Disposition of abandoned embryos. Fertil Steril. 2004; 82(Suppl. 1):S253.CrossRefGoogle Scholar
  17. 17.
    Woodward T. Life on Ice, Newsweek, June 19, 2009. http://www.newsweek.com/id/202819. Accessed September 1, 2009.
  18. 18.
    Gurmankin AD, Sisti D, Caplan AL. Embryo disposal practices in IVF clinics in the United States. Politics Life Sci. 2004; 22(2), http://repository.upenn.edu/cgi/viewcontent.cgi?article=1006&context=bioethics_papers. Accessed September 1, 2009.
  19. 19.
    Burgess E, Singhal N, Amin H, McMillan DD, Devrome H. Consent for clinical research in the neonatal intensive care unit: a retrospective survey and a prospective study. Arch Dis Child Fetal Neonatal Ed. 2003; 88:F280 –6.PubMedCrossRefGoogle Scholar
  20. 20.
    Kodish ED, Pentz RD, Noll RB, Ruccione K, Buckley J, Lange BJ. Informed consent in the Children’s Cancer Group: results of preliminary research. Cancer. 1998; 82:2467 –81.PubMedCrossRefGoogle Scholar
  21. 21.
    Kupst MJ, Patenaude AF, Walco GA, Sterling C. Clinical trials in pediatric cancer: parental perspectives on informed consent. J Pediatr Hematol Oncol. 2003; 25:787–90.PubMedCrossRefGoogle Scholar
  22. 22.
    Levi RB, Marsick R, Drotar D, Kodish ED. Diagnosis, disclosure, and informed consent: learning from parents of children with cancer. J Pediatr Hematol Oncol. 2000; 22:3–12.PubMedCrossRefGoogle Scholar
  23. 23.
    Ruccione K, Kramer RF, Moore IK, Perin G. Informed consent for treatment of childhood cancer: factors affecting parents’ decision making. J Pediatr Oncol Nurs. 1991; 8:112–21.PubMedCrossRefGoogle Scholar
  24. 24.
    Singhal N, Oberle K, Burgess E, Huber-Okrainec J. Parents’ perceptions of research with newborns. J Perinatol. 2002; 22:57–63.PubMedCrossRefGoogle Scholar
  25. 25.
    Stevens PE, Pletsch PK. Ethical issues of informed consent: mothers’ experiences enrolling their children in bone marrow transplantation research. Cancer Nurs. 2002; 25:81–7.PubMedCrossRefGoogle Scholar
  26. 26.
    Eder ML, Yamokoski AD, Wittmann PW, Kodish ED. Improving informed consent: suggestions from parents of children with leukemia. Pediatrics. 2007; 119(4):e849–59.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2010

Authors and Affiliations

  1. 1.School of Medicine, University of CaliforniaIrvineUSA

Personalised recommendations