P–353 When Parents and Minor Children Disagree about Fertility Preservation: A Scoping Review and Ethical Analysis
Authors: Bayefsky M , Dorice V , Caplan A , Quinn G 
Published: August 2021

Abstract

Study question
Periodically, parents and children disagree about whether to pursue fertility preservation (FP). How should medical teams navigate these ethically complex situations?

Summary answer
Several considerations must be weighed, including the minor’s age, the burden of the proposed procedure, and whether the minor or parent seeks to decline FP.

What is known already
As reproductive technology advances, FP prior to gonadotoxic therapy has become the standard of care. Periodically, parents and children disagree about whether to pursue FP. To date, there is no clear guidance on how to navigate these difficult situations. Prior studies have demonstrated that adolescents undergoing gonadotoxic therapy want their views regarding FP to be taken into account, and also that most children and adolescents are comfortable with parental involvement in decision-making. However, transgender adolescents pursue FP at lower rates than adolescents with cancer, and more research is required to elucidate the unique needs and barriers of transgender youth.

Study design, size, duration
This study involves a scoping review and ethical analysis about parent-child disagreement regarding FP in minors. The review analyzes papers that either demonstrate that parent-child disagreement occurs, describe the preferences of parents or children regarding decision-making around FP, or provide recommendations that can be used to resolve parent-child conflicts. The ethical analysis weighs relevant rights and interests, including the child’s best interest, the right to an open future, the child’s autonomy, and parental autonomy.

Participants/materials, setting, methods
A search string was developed to identify all relevant published manuscripts on the topic of FP in minors, including studies on decision-making, family relations and ethical challenges. The search was run through several databases, abstracts were screened using Covidence, and data were extracted from full texts. Data abstracted from the review and existing literature on general medical decision-making for minors were used to construct an ethical framework for parent-child disagreements regarding FP in minors.

Main results and the role of chance
Published work directly on the topic of parent-child disputes regarding FP is limited, however a number of studies tangentially discuss parent-child disagreements and provide insight into the desires of parents and children regarding decision-making around FP. Studies suggest that adolescents desire to have their views taken into account, and a minority of adolescents believe their wishes alone should be followed. The age of the minor is a crucial factor, and some propose that as adolescents approach adulthood, their autonomy should increase. At the same time, in practice, legal and financial constraints often render parents the ultimate decision-makers. Our ethical analysis weighs competing considerations, including the child’s best interest, the right to an open future, the child’s autonomy, and parental autonomy. It concludes that who prevails should depend on contextual factors, including the minor’s age, the burden of the proposed procedure, and whether the minor or parent seeks to decline FP. There may also be special considerations for transgender adolescents, some of whom might have deeply personal reasons for pursuing or forgoing FP that are not well-understood by cisgender parents.

Limitations, reasons for caution
The scoping review captured a variety of results, including survey and interview studies, society guidelines, and ethical analyses. As such, we were unable to define a uniform quality metric. However, we aimed to be more rather than less inclusive because of the limited results directly pertaining to parent-child disagreements.
Wider implications of the findings: This study provides a robust review of decision-making for FP in minors and offers an ethical framework for weighing countervailing considerations when parents and children disagree about whether to pursue FP. The conclusions can be used to inform guidance for clinicians presented with this challenging ethical dilemma.

Trial registration number
N/A