Journal of Assisted Reproduction and Genetics

, Volume 36, Issue 9, pp 1787–1791 | Cite as

Conducting reproductive research during a new childhood cancer diagnosis: ethical considerations and impact on participants

  • Leena NahataEmail author
  • Taylor L. Morgan
  • Keagan G. Lipak
  • Olivia E. Clark
  • Nicholas D. Yeager
  • Sarah H. O’Brien
  • Stacy Whiteside
  • Anthony N. Audino
  • Cynthia A. Gerhardt
  • Gwendolyn P. Quinn
Fertility Preservation



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.


Cancer Fertility Ethics Participant burden 



The authors would like to thank the families who participated in this study.

Funding information

This research was financially supported by the Clinical and Translational Intramural Funding Program at the Abigail Wexner Research Institute.


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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  • Leena Nahata
    • 1
    • 2
    • 3
    Email author
  • Taylor L. Morgan
    • 1
  • Keagan G. Lipak
    • 1
  • Olivia E. Clark
    • 1
  • Nicholas D. Yeager
    • 3
    • 4
  • Sarah H. O’Brien
    • 3
    • 4
    • 5
  • Stacy Whiteside
    • 4
  • Anthony N. Audino
    • 3
    • 4
  • Cynthia A. Gerhardt
    • 1
    • 3
  • Gwendolyn P. Quinn
    • 6
  1. 1.Center for Biobehavioral HealthAbigail Wexner Research InstituteColumbusUSA
  2. 2.Division of EndocrinologyNationwide Children’s HospitalColumbusUSA
  3. 3.The Ohio State University College of MedicineColumbusUSA
  4. 4.Division of Hematology/OncologyNationwide Children’s HospitalColumbusUSA
  5. 5.Center for Innovation and Pediatric PracticeAbigail Wexner Research InstituteColumbusUSA
  6. 6.Department of Obstetrics and GynecologyNew York University School of MedicineNew YorkUSA

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