# Ethical Issues in Fertility Preservation Among Terminal AYA

> **NIH NIH R25** · H. LEE MOFFITT CANCER CTR & RES INST · 2020 · $102,177

## Abstract

Adolescent and young adults (AYA) with cancer have distinct medical and psychosocial needs, with
reproductive health and fertility being a chief concern. However, reproductive health takes on a different meaning
for AYA who have a poor prognosis or terminal diagnosis. Coupled with the distinct needs of AYA with terminal
cancer are the needs of their partners and/or caregivers, as decision making around fertility can cause added
distress. Clinicians face unique ethical issues around discussions of fertility and preservation, which may be
misinterpreted in various ways, from false hope to encouragement of posthumous reproduction. While there are
several ethical issues inherent to cancer and reproductive health among those with terminal diagnoses, none
are more fraught with polarity than that of fertility preservation and the use of posthumous reproduction.
 With the widespread availability of assisted reproductive technology, posthumous assisted reproduction
includes the use of tissue, gametes, or embryos from deceased individuals for future family building attempts.
Posthumous assisted reproduction (PAR) encompasses gamete, embryo, and tissue cryopreservation prior to
fertility-compromising insult (gonadotoxic chemotherapy or surgery), and retrieval of tissue or gametes after
death. While neither form is common, all have been widely discussed because of their ethical complexities,
raising major questions about consent of the deceased, ownership of stored gametes, and parental rights to the
stored gametes of minors.
ASCO guidelines suggest all reproductive age patients should be offered counsel and referrals to specialists
for fertility preservation, but there is little guidance and great controversy over such offers to those with a
terminal diagnosis. Further, partners and parents often agonize over what to do with stored gametes of a
deceased loved one. Reproductive health providers face increasing requests for PAR as demonstrated by our
national 2019 study among assisted reproduction clinics. The parent grant, Enriching Communication skills for
Health professionals in Oncofertility (ECHO) trains nurses, social workers, psychologists, and physician
assistants (Allied Health Professionals [AHPs]) to improve communication about reproductive health with AYA,
to date training over 500 AHPs. This supplement provides an opportunity to explore and understand AHPs'
perceptions, values, and awareness of policies regarding PAR among AYA with terminal cancer, as well as to
improve AHPs' communication skills about discussing fertility preservation and the use of PAR with terminally
ill AYA and their partners/families. To accomplish these goals this application has the following aims: 1.
Explore ENRICH/ECHO trainees' awareness, perceptions, and experiences of fertility preservation among the
terminally ill and posthumous assisted reproduction, and related institutional policies. 2. Identify needs for
ethics-based curricula related to fertility preservation am...

## Key facts

- **NIH application ID:** 10127252
- **Project number:** 3R25CA142519-10S1
- **Recipient organization:** H. LEE MOFFITT CANCER CTR & RES INST
- **Principal Investigator:** Gwendolyn P Quinn
- **Activity code:** R25 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $102,177
- **Award type:** 3
- **Project period:** 2011-08-02 → 2022-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10127252

## Citation

> US National Institutes of Health, RePORTER application 10127252, Ethical Issues in Fertility Preservation Among Terminal AYA (3R25CA142519-10S1). Retrieved via AI Analytics 2026-05-26 from https://api.ai-analytics.org/grant/nih/10127252. Licensed CC0.

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