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

  • Fertility Preservation
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Abstract

Purpose

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.

Methods

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.

Results

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.

Conclusion

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.

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Acknowledgments

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

Funding

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

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Authors and Affiliations

  1. Center for Biobehavioral Health, Abigail Wexner Research Institute, Columbus, OH, USA

    Leena Nahata, Taylor L. Morgan, Keagan G. Lipak, Olivia E. Clark & Cynthia A. Gerhardt

  2. Division of Endocrinology, Nationwide Children’s Hospital, Columbus, OH, USA

    Leena Nahata

  3. The Ohio State University College of Medicine, Columbus, OH, USA

    Leena Nahata, Nicholas D. Yeager, Sarah H. O’Brien, Anthony N. Audino & Cynthia A. Gerhardt

  4. Division of Hematology/Oncology, Nationwide Children’s Hospital, Columbus, OH, USA

    Nicholas D. Yeager, Sarah H. O’Brien, Stacy Whiteside & Anthony N. Audino

  5. Center for Innovation and Pediatric Practice, Abigail Wexner Research Institute, Columbus, OH, USA

    Sarah H. O’Brien

  6. Department of Obstetrics and Gynecology, New York University School of Medicine, New York, NY, USA

    Gwendolyn P. Quinn

Authors
  1. Leena Nahata
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  2. Taylor L. Morgan
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Correspondence to Leena Nahata.

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Nahata, L., Morgan, T.L., Lipak, K.G. et al. Conducting reproductive research during a new childhood cancer diagnosis: ethical considerations and impact on participants. J Assist Reprod Genet 36, 1787–1791 (2019). https://doi.org/10.1007/s10815-019-01546-2

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  • DOI: https://doi.org/10.1007/s10815-019-01546-2

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