Pathways toward the future: points to consider for oncofertility oversight

Abstract

Introduction: In September 2007, Northwestern University's Feinberg School of Medicine received a $21.1 million dollar, 5-year grant from the National Institutes of Health to fund the Oncofertility Consortium (OFC). Over the course of the grant, those engaged with the psychological, legal, social, and ethical issues arising from oncofertility provided recommendations to the OFC. The inclusion of serious, real-time consideration of ethical issues as a funded focus of the grant and the work of scholars in law, bioethics, and economics was a key part of the process of research. Now that this grant has ended, this commentary points to some of the issues that came forward during the 5 years of this project. Because of the emerging status of oncofertility, these issues are ones that need continued discussion and clarification, prompting our call for an oversight mechanism to provide guidance for how this technology should proceed.

Methods: An initial draft of this commentary arose from notes taken during a small colloquium held to discuss the oversight of oncofertility following the conclusion of the grant. This colloquium occurred in the fall of 2011. Using these notes as a starting point, the draft was then sent to other researchers who had been involved with the OFC in considering the psychological, legal, social, and ethical issues related to fertility preservation for cancer patients during the course of the grant. Finally, this commentary was further framed by the authors' review of existing published and gray literature regarding issues concerning fertility preservation for cancer patients.

Results: We provide several points to consider and then offer two suggestions for an oversight mechanism for research as it continues.

Discussion/conclusions: We assert the need not just for guidelines for the clinical practice of oncofertility, but also for oversight of the scope of this emerging technology because of its profound implications. We recognize that many long to a have a child and form a family and that, for some, cancer interrupts this path. With the conclusion of this grant, we call for the creation of a permanent oversight mechanism to thoughtfully and earnestly consider how to guide oncofertility to allow this emerging technology to be carefully considered as it develops.

Implications for cancer survivors: The circumstances in which fertility preservation should be discussed and the patients for whom fertility preservation would be most suitable are important guideline issues for people who survive cancer and for their treatment team. Oversight of the field of oncofertility would strengthen the rights of cancer patients and help protect them from abuses as well as alert health care professionals to their correlative duties to these vulnerable patients and families.

Figure 1

Oversight Mechanism