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 among AYA with terminal cancer and posthumous assisted reproduction.
Reproductive health and fertility take on a different meaning for AYA who have a poor prognosis or terminal diagnosis. This supplement will explore and understand clinicians' perceptions, values, and awareness of policies regarding posthumous reproduction among AYA with terminal cancer.
