Enriching Communication skills for Health professionals in Oncofertility and Trainers in Oncofertility Reproductive Communication and Health - Revision - 1

New York University School Of Medicine, New York NY

Investigators

Linked publications & trials

Abstract

Adolescent and young adult (AYA) cancer patients have distinct medical and psychosocial needs, with reproductive health being a chief concern.[1-5] Reproductive health for AYA cancer patients can include issues such as infertility and fertility preservation (FP).[6] These issues takes on a different meaning in AYA who have a poor prognosis/end-stage cancer or terminal diagnosis, for whom reproduction during their lifetime is deemed unlikely. Coupled with the distinct needs of terminal AYA are those of their partners and caregivers, as decision making around fertility can cause added distress. This poses unique ethical issues for clinicians in discussions of FP. The use of gametes stored from the deceased is also fraught with ethical and legal issues, as policies often do not exist, are inconsistent, or not well understood by the original donor or potential recipient. Although rare, requests for peri-mortem gamete retrieval are also ethically challenging, particularly when clear conversations and documentation about the patient's intentions for posthumous parenthood cannot or do not occur. Finally, the recent Supreme Court ruling in Dobbs v. Jackson Women's Health Organization has raised issues specific to creating and storing embryos for the purposes of FP given the “personhood” assigned to embryos under some states' legislation. While American Society of Clinical Oncology (ASCO) guidelines suggest all patients of reproductive age should be offered counsel and referrals to specialists for FP, there is little guidance and great controversy over such offers to patients with poor oncologic prognoses. Moreover, there is a dearth of guidance and regulation regarding how to dispose or distribute stored gametes after patient death. The American Society of Reproductive Medicine (ASRM) Ethics Committee suggests programs develop clear policies outlining the circumstances under which they would participate in posthumous assisted reproduction(PAR).3 ASRM also recommends consent forms include specific directions regarding posthumous use of embryos and gametes, including specifying a bereavement period following the patient's death prior to the use of the patient's gametes or embryos. Despite these strong recommendations, there is a lack of evidence supporting adoption of institutional policies. The legal implications of recent political and judicial events may have also altered ability to adhere to existing policies. Our goal is to build a framework for the consideration of the ethical, legal, and social implications (ELSI) of PAR and distribution/destruction of stored gametes from deceased patients. The parent grant, Enriching Communication skills for Health professionals in Oncofertility and Trainers in Oncofertility Reproductive Communication and Health (ECHO -TORCH) provides communication strategies for discussion reproductive health with AYA. This supplement will aid in expanding and improving ECHO-TORCH with our current and future traineesThe proposed study aims to understand the perspectives of stakeholders related to PAR and gamete disposition discussions and use.