Conducting reproductive research during a new childhood cancer diagnosis: ethical considerations and impact on participants
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Research among adults shows benefits and low perceived burden of engaging in behavioral research. However, questions remain regarding the ethics of conducting behavioral research in pediatric populations during sensitive situations, including during a new life-threatening diagnosis or at end-of-life. We examined reactions to participating in a behavioral reproductive research study among male adolescents newly diagnosed with cancer and their parents, as a step towards optimizing fertility preservation utilization in a population where future infertility is common.
Pediatric literature regarding the ethics of behavioral research was reviewed. In our pilot, forty-four participants (19 mothers, 11 fathers, 14 male adolescents newly diagnosed with cancer) from 20 families completed demographic questionnaires and a fertility preservation decision tool developed by the study team. Qualitative interviews exploring the impact of study participation were subsequently conducted. Verbatim transcripts were coded for thematic content using the constant comparison method.
Literature review showed positive reactions to research participation among youth/caregivers. In our pilot study, 89% (n = 17) of mothers, 64% (n = 7) of fathers, and 71% (n = 10) of adolescents reported at least one benefit of participating. Eleven percent (n = 2) of mothers, 36% (n = 4) of fathers, and 29% (n = 4) of adolescents said they were not affected; none of the participants reported a negative effect.
Consistent with prior literature, our study suggests behavioral reproductive research prior to cancer treatment can offer direct benefits to participants and society, without increasing burden. These findings will inform future interventions to improve long-term psychosocial and reproductive outcomes for youth with cancer.
KeywordsCancer Fertility Ethics Participant burden
The authors would like to thank the families who participated in this study.
This research was financially supported by the Clinical and Translational Intramural Funding Program at the Abigail Wexner Research Institute.
- 2.Howlader N, Noone A, Krapcho M, Garshell J, Neyman N, Altekruse S, et al. SEER Cancer Statistics Review, 1975–2010. [Based on the November 2012 SEER data submission, posted to the SEER web site, April 2013.]. Bethesda: National Cancer Institute; 2013. p. 9.Google Scholar
- 7.Lehmann V, Nahata L, Ferrante AC, Hansen-Moore JA, Yeager ND, Klosky JL, Gerhardt CA. Fertility-related perceptions and impact on romantic relationships among adult survivors of childhood cancer. J Adolesc Young Adult Oncol. 2018;7(4):409–414.Google Scholar
- 14.Vadaparampil ST, Clayton H, Quinn GP, King LM, Nieder M, Wilson C. Pediatric oncology nurses’ attitudes related to discussing fertility preservation with pediatric cancer patients and their families. J Pediatr Oncol Nurs. 2007;24(5):255–63. https://doi.org/10.1177/1043454207303878.CrossRefGoogle Scholar
- 17.Wiener L, Battles H, Zadeh S, Pao M. Assessing the experience of medically ill youth participating in psychological research: benefit, burden, or both? IRB. 2015;37(6):1.Google Scholar
- 21.Hohmann C, Borgmann-Staudt A, Rendtorff R, Reinmuth S, Holzhausen S, Willich SN, et al. Patient counselling on the risk of infertility and its impact on childhood cancer survivors: results from a national survey. J Psychosoc Oncol. 2011;29(3):274–85. https://doi.org/10.1080/07347332.2011.563344.CrossRefGoogle Scholar
- 23.Hagenas I, Jorgensen N, Rechnitzer C, Sommer P, Holm M, Schmiegelow K, et al. Clinical and biochemical correlates of successful semen collection for cryopreservation from 12-18-year-old patients: a single-center study of 86 adolescents. Hum Reprod. 2010;25(8):2031–8. https://doi.org/10.1093/humrep/deq147.CrossRefGoogle Scholar
- 25.Oktay K, Harvey BE, Partridge AH, Quinn GP, Reinecke J, Taylor HS et al. Fertility preservation in patients with cancer: ASCO Clinical Practice Guideline Update. J Clin Oncol Off J Am Soc Clin Oncol. 2018;JCO2018781914. https://doi.org/10.1200/JCO.2018.78.1914.
- 26.Klosky JL, Wang F, Russell KM, Zhang H, Flynn JS, Huang L et al. Prevalence and predictors of sperm banking in adolescents newly diagnosed with cancer: examination of adolescent, parent, and provider factors influencing fertility preservation outcomes. J Clin Oncol Off J Am Soc Clin Oncol. 2017;JCO2016704767. https://doi.org/10.1200/JCO.2016.70.4767.
- 28.Morgan TL, Clark OE, Whiteside S, Audino A, Yeager ND, Klosky J, O’Brien SH, Gerhardt CA, Nahata L. Recruiting families and children newly diagnosed with cancer for behavioral research: important considerations and successful strategies. Psycho-Oncology. 2019.Google Scholar
- 31.Kassam-Adams N, Newman E. Child and parent reactions to participation in clinical research. Gen Hosp Psychiatry. 2005;27(1):29–35. https://doi.org/10.1016/j.genhosppsych.2004.08.007.CrossRefGoogle Scholar
- 33.Tager J, Battles H, Bedoya SZ, Gerhardt CA, Young-Saleme T, & Wiener, L. Participation in online research examining end-of-life experiences: Is it beneficial, burdensome, or both for caregivers bereaved by childhood cancer?. Submitted for publication. 2018.Google Scholar
- 35.Adolescent Fertility Values Clarification Tool. 2012. http://oncofertility.northwestern.edu/sites/oncofertility/files/legacy_files/g_quinn_adolescent_fertility_vct.pdf.
- 37.Cohen J. Statistical power analysis for the behavioral sciences. 2nd ed. Hillsdale: Lawrence Earlbaum Associates; 1988.Google Scholar