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Journal of Assisted Reproduction and Genetics

Published in:

01-09-2019 | Fertility | Fertility Preservation

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

Authors: Leena Nahata, 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

Published in: Journal of Assisted Reproduction and Genetics | Issue 9/2019

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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Title: Conducting reproductive research during a new childhood cancer diagnosis: ethical considerations and impact on participants
Authors: Leena Nahata
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
Publication date: 01-09-2019
Publisher: Springer US
Keywords: Fertility
Infertility
Infertility
Published in: Journal of Assisted Reproduction and Genetics / Issue 9/2019
Print ISSN: 1058-0468
Electronic ISSN: 1573-7330
DOI: https://doi.org/10.1007/s10815-019-01546-2

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

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

Abstract

Purpose

Methods

Results

Conclusion

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Abstract

Purpose

Methods

Results

Conclusion

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