In-depth interviews with uterine transplant trial participants reveal desire for choice, control and privacy in family building
By Elliott Richards, MD and Ruth Farrell, MD, MA
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Despite increasing numbers of uterine transplant attempts worldwide and growing innovations in how the procedure is performed, there has been very little reported regarding the perspectives of the participants in these research trials. For our work, recently published in the American Journal of Bioethics Empirical Bioethics, we sought to explore these women’s motivations for and considerations of uterine transplant.
Absolute uterine factor infertility (AUFI) is the absence of a uterus or the physiological inability of a uterus to sustain a pregnancy. It is surprisingly a relatively common condition, affecting an estimated one in 500 reproductive-aged women worldwide. Causes of AUFI are generally grouped into congenital or acquired causes, such as being born without a uterus or having an unplanned hysterectomy for a life-threatening condition. Regardless of the cause, and unlike all other major causes of infertility, AUFI currently has no treatment options and is often a devastating diagnosis.
Uterine transplantation has the potential to become an approach for the management of women with AUFI who want to have children. It involves procurement of a graft (uterus) from either a living or a deceased donor, followed by re-implantation of the graft into a recipient and, eventually, transfer of embryos into the transplanted uterus. The number of uterine transplants performed and the number of children born as a result of the procedure continue to emerge, and to our knowledge, there have been at least 12 children born following uterine transplants, including eight in Sweden, two in the United States, one in Brazil and one in Croatia, although other efforts may be well underway. By providing or restoring the ability to carry the pregnancy, uterine transplantation may become the first and only definitive treatment for AUFI.
To date, only conceptual work existed about why women may seek uterine transplant and how they viewed the risks, benefits and alternatives to participating in a trial of the procedure. Based on our preliminary work with uterine transplantation study candidates, we hypothesized that the motivations and the perspectives of these women were more complex than previously described. To learn more, we conducted a mixed methods study with women with AUFI who had previously contacted Cleveland Clinic regarding the Uterine Transplant Trial and met the initial eligibility criteria for participation. We chose to begin our work with qualitative methods, turning to the women considering transplant to describe how they viewed the utility and drawbacks of uterine transplantation, with the plan to use these data to develop instruments for use among larger and more diverse patient and study populations. For this reason, we conducted a series of in-depth interviews with study participants in conjunction with the administration of the FertiQoL, a validated and widely used tool to measure the impact of infertility on the quality of life of infertility patients.
We learned several things through our study. As expected, all participants rated their overall health as good. Some experienced grief and social isolation from their diagnosis. For these women, AUFI was viewed a life-framing experience that influences their acceptance of self and their acceptance by family, partners and peers. Almost universally, these women saw uterine transplantation as a means to gain control of their reproductive autonomy, allowing family-building and the ability to play an active role in their prenatal health and well-being.
We also learned that study participants described the risks of uterine transplantation in unique and nuanced ways. Participants in this trial recognized the documented surgical and medical risks of being in a trial of uterine transplantation. Yet, they also described other risks that were given equal consideration in their decisions about study participation. For instance, the goal to maintain a supportive relationship and care for the partner and family were key issues when considering uterine transplantation. Relationships were important for all women but described in different ways. We noted that participants with congenital uterine factor infertility described the challenges they experienced in finding a life partner, one who would accept the diagnosis of infertility from the onset of the relationship. Many of the participants with acquired uterine factor infertility described the life-threatening experiences they encountered that led to uterine factor infertility (e.g., obstetrical or gynecological emergency) and the experiences of their partner who witnessed their acute illness and help through the recovery. Thus, risks were not viewed in terms of oneself but also what they mean to the partner, relationship and family. Additionally, study participants perceived the risks of uterine transplantation (to self, child and family) not in isolation but relative to the risks posed by adoption and surrogacy, the latter of which was perceived to be not insignificant.
Our study reveals that AUFI is indeed a life-framing experience that can lead to experiences of guilt and social isolation, while the possibility of uterine transplantation offers a means to gain control of family-building. Ultimately, the ways in which women with AUFI conceptualize this condition in their lives and choices around uterine transplantation and participating in a study of the procedure are multifaceted and textured. Further studies, involving larger and more diverse samples, are warranted. These perspectives are critical to understanding its ethical, legal and social implications of this procedure, not just at these initial stages of the study of uterine transplantation but as the science and clinical potential of it grows.
Ruth Farrell, MD, MA, is Vice Chair for Clinical Research in Cleveland Clinic’s Ob/Gyn & Women’s Health Institute. Elliot Richards, MD, is a fellow in the OB/GYN & Women’s Health Institute.
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