Site:  Northwestern University

Principal Investigators: Linda Emanuel, PhD, MD; Sherman Elias, MD; Laurie Zoloth, PhD; and Dorothy Roberts, JD

Overview

This project evaluates the ethical and legal issues surrounding the use of reproductive technologies in cancer patients, with a special emphasis on the implications for pediatric patients and their families.

Objectives

  • A critical assessment of the ethical, religious, and legal constraints associated with the application of advanced fertility opportunities to young women and girls facing fertility-threatening diseases.
  • An evaluation of the existing norms of pediatric decision-making for the young child and family who will make such decisions on their behalf, and the implications for medical practice and health care policy.
  • An assessment and consideration of the competing moral appeals that arise in connection with the long-term uses of this research.

Indices of Scholarship 

  • Meet with leaders from religion, law, psychology, social science, political science, and biomedical policy to identify all the major issues raised by the advanced fertility options in this project
  • Based on the issues identified, conduct a comprehensive literature review that will result in a manuscript to set out the issues, identify arguments, and highlight the areas in need of further deliberation
  • For each key issue, identify real and hypothetical, but realistic, cases for analysis of: (1) medical risks and benefits; (2) how best to communicate with patients and families on issues of oncofertility; (3) economic considerations; (4) ethical options; and (5) decision-making approaches for clinicians, patients, and families
  • Reconvene at a mini-symposium to discuss positions, fill gaps, and collectively author a consensus paper that will provide direction and make recommendations regarding the professionally-guided ethical norms of practice for advanced reproductive oncofertility technology. Articles, notes, and presentations from the Center for Bioethics, Science and Society’s Oncofertility Summit are available in the Virtual Library.

Consortium Support and Impact

This project draws on other parts of the Oncofertility Consortium in developing a social science inquiry that is informed by scientific innovation and insight.  It relies on clinical and medical perspectives and advances and application of oncofertility technology (see Follice Cryopreservation, Bioengineering Primate Follicles, and Human Follicle Maturation In Vitro) to develop surveys, focus group guidelines, and interviews while serving as an integrated link to interdisciplinary biomedical research in ovarian follicle harvesting, cryopreservation, maturation, and fertilization.  Insights regarding the psychosocial impact of infertility on the lives of cancer patients and their families will be applied to the training, education, and advocacy mission of the Consortium.

Publications

Backhus LE and Zoloth L. Today’s Research, Tomorrows Cures: The Ethical Implications of Oncofertility. 2007.

Zoloth L, Backhus LE and Woodruff TK. Waiting to be Born: The Ethical Implications of the Generation of “NUBorn” and “NUAge” Mice from Pre-Pubertal Ovarian Tissue. The American Journal of Bioethics, 8:6,21 — 29, 2008.

Zoloth L, Backhus LE Woodruff TK, Henning A, and Raucher M.  Like/As: Metaphor and Meaning in Bioethics Narrative. The American Journal of Bioethics, 8(6): W3-W5, 2008.

Dolin G,. Roberts DE, Rodriguez LM, Woodruff TK.  Medical hope, legal pitfalls: Potential legal issues in the emerging field of oncofertility. Santa Clara L. Rev. 2009.

Zoloth, L. Jewish Perspectives on Oncofertility: The Complexities of Tradition. Cancer Treatment and Research. 2010; 156: 307-17. PMID: 20811844.

Zoloth, L. Final Thoughts. Cancer Treatment and Research. 2010; 156: 487-9. PMID: 20811861.

Zoloth, L and Henning A. Bioethics and Oncofertility: Arguments and Insights from Religious Traditions. Cancer Treatment and Research. 2010; 156: 261-78. PMID: 20811840.

This research was supported by the Oncofertility Consortium®, funded by the National Institutes of Health through the NIH Roadmap for Medical Research, Grant UL1DE19587 and RL1HD058296.