Whose Future Is It? Ethical Family Decision Making About Daughters’ Treatment in the Oncofertility Context
In cases of fertility-threatening cancer treatments, the choice whether or not to undergo fertility preservation treatment before cancer treatment begins represents a high-stakes, time-sensitive, emotionally charged, nested decision . The choice is life altering and, although presumably a discrete decision, the fertility preservation decision serves as an outcome of a very recent challenging decision to pursue fertility-threatening cancer treatments. Patients and their family members will experience the dual impact of these linked treatment-related decisions for years to come. For many patients, family members play significant roles in treatment-related decision making. However, if the patient has not reached the age of legal majority, family members play additional roles in the decision-making processes.
KeywordsCancer Survivor Healthcare Provider Fertility Preservation Pediatric Cancer Family Communication
This research was supported by the Oncofertility Consortium NIH 8UL1DE019587, 5RL1HD058296. Dr. Clayman is supported by Award Number K12HD055884 from NICHD.
- 1.Galvin KM. Deliberation in a contested medical context: developing a framework to aid family decision making when an adolescent son faces fertility-threatening cancer treatment. Alta Argument Conference. Vol. 16. Alta: Utah 2009:98–105.Google Scholar
- 2.Minuchin S. Family kaleidoscope. Cambridge: Harvard University Press; 1984.Google Scholar
- 7.Committee on Bioethics, American Academy of Pediatrics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics. 1995; 95(2):314–7.Google Scholar
- 17.Public Law #101-508 && 4206; 4751 (codified at 42 USC &&1395 cc, 1369a(a))1990.Google Scholar
- 22.Institute of Medicine Committee on Clinical Research Involving Children. Ethical conduct of clinical research involving children. Washington: National Academies Press; 2004.Google Scholar
- 24.Kreider RM. Adopted children and stepchildren: 2000 (C2KBR-30). Census 2000 Special Reports. 2003. http://www.census.gov/prod/2003pubs/censr-6.pdf. Accessed February 1, 2005.
- 25.Simmons T, O’Neill G Households and families: 2000 (C2KVR/01-8). Census 2000 brief. 2001. http://www.census.gov/prod/2001pubs/cd2br01-8.pdf growing number of cases, children are raised in households headed by. Accessed December 18, 2004.
- 26.Mallon GP. Gay men choosing parenthood. New York: Columbia University Press; 2004.Google Scholar
- 27.Backhus LE, Zoloth L. Today’s research, tomorrows cures: the ethical implications of oncofertility. In: Woodruff TK, Snyder KA, Eds. Oncofertility. Vol. 138. New York: Springer; 2007:163–79.Google Scholar
- 28.Clayman ML, Galvin KM, Arntson P, Cameron K.A., Harper M. Use of theory to develop a decision aid for parents whose daughters face cancer-related threats to fertility. Paper presented at International Shared Decision Making Conference Boston, June 2009.Google Scholar
- 39.Crawshaw M, Sloper P. A qualitative study of the experiences of teenagers and young adults when faced with possible or actual fertility impairment following cancer treatment. 2006. http://york.ac.uk/inst/spru/pubs/pdf/fertility.pdf. Accessed December 28, 2006.
- 45.Warren C. Communicating about sex with parents and partners. In: Galvin KM, Cooper PJ, Eds. Making connections: readings in relational communication. 4th edn. Los Angeles: Roxbury; 2006:319–22.Google Scholar
- 47.Balen A., Glaser A. Health conditions and treatments affecting fertility in childhood and teenage years. In: Balen R, Crawshaw M, Eds. Sexuality and fertility issues in ill health and disability. London: Jessica Kingsley Publishers; 2006:67–84.Google Scholar
- 48.Imber-Black E. The secret life of families. New York: Bantam Books; 1998.Google Scholar
- 50.Featherstone K, Atkinson P, Bharadwaj A, Clarke A. Risky relations: family, kinship, and the new genetics. New York: Berg Publishers; 2006.Google Scholar
- 51.Nieman CL, Kinahan KE, Yount SE, et al. Fertility preservation and adolescent cancer patients: lessons from adult survivors of childhood cancer and their parents. In: Woodruff TK, Snyder KA, Eds. Oncofertility. Vol. 138. New York: Springer; 2007:201–17.Google Scholar