Abstract
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.
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References
Schloendorff V. Society of New York Hospitals, 211 N.Y. 2d (1914).
Kathleen G. Whose future is it? Ethical family decision making in the Oncofertility context. Proceedings of the 2nd Annual Oncofertility Summit, Chicago, July 2009.
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.
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.
Appelbaum PS, Roth LH, Lidz C. The therapeutic misconception: informed consent in psychiatric research. Int J Law Psychiatry. 1982; 5:319–29.
Appelbaum PS, Lidz CW, Grisso T. Therapeutic misconception in clinical research: frequency and risk factors. IRB. 2004; 26:1–8.
Lidz CW. The therapeutic misconception and our models of competency and informed consent. Behav Sci Law. 2006; 24:535–46.
Childress JF, Siegler M. Metaphors and models of doctor-patient relationships: their implications for autonomy. Theor Med. 1984; 5:17–30.
Barrett R. Quality of informed consent: measuring understanding among participants in oncology clinical trials. Oncol Nurs Forum. 2005; 32(4):751–5.
Research Misconception, DeMarco JP, Markman M. The research misconception. Int J Appl Philos. 2004; 18(2):241–52.
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.
Halpern J. Let’s value but not idealize, emotions. J Clin Ethics. 2007; 18(4):380–3.
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.
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.
BBC News Online, Q&A Frozen sperm, May 25, 2004, http://news.bbc.co.uk/2/hi/health/3745085.stm. Accessed September 1, 2009.
Ethics Committee of the American Society for Reproductive Medicine. Disposition of abandoned embryos. Fertil Steril. 2004; 82(Suppl. 1):S253.
Woodward T. Life on Ice, Newsweek, June 19, 2009. http://www.newsweek.com/id/202819. Accessed September 1, 2009.
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.
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.
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.
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.
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.
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.
Singhal N, Oberle K, Burgess E, Huber-Okrainec J. Parents’ perceptions of research with newborns. J Perinatol. 2002; 22:57–63.
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.
Eder ML, Yamokoski AD, Wittmann PW, Kodish ED. Improving informed consent: suggestions from parents of children with leukemia. Pediatrics. 2007; 119(4):e849–59.
Acknowledgments
This research was supported by the oncofertility consortium NIH 8UL1DE019587, 5RL1HD058296.
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Cohn, F. (2010). Oncofertility and Informed Consent: Addressing Beliefs, Values, and Future Decision Making. In: Woodruff, T., Zoloth, L., Campo-Engelstein, L., Rodriguez, S. (eds) Oncofertility. Cancer Treatment and Research, vol 156. Springer, Boston, MA. https://doi.org/10.1007/978-1-4419-6518-9_19
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