Posted on July 25, 2018 at 12:12 PM
This post is shared from the July 2018 issue of the American Journal of Bioethics.
by Hilary Mabel, Ruth M. Farrell & Andreas G. Tzakis
In this issue of the American Journal of Bioethics, Bruno and Arora’s Target Article and the Open Peer Commentaries thereto contribute to the ongoing discourse regarding ethical issues in uterine transplantation. We welcome these insights, many of which sit in dialogue with existing work and others of which represent new considerations in uterine transplantation. We are co-investigators on the uterine transplantation research protocol at Cleveland Clinic. Our protocol uses a deceased donor model, and two of us (HM and RF) contribute to the protocol solely in an ethics capacity. As ethicists integrated into the research team, we meet with potential participants to discuss ethical issues that arise at various stages of the research process, support the informed consent process, provide recommendations regarding participant candidacy, and advise the research team regarding the ethical supportability of various aspects of the protocol. One thread that we find notable in the work in this issue is the role that gender and perceptions of women’s motivations play in conceptualizing the ethical issues attendant to uterine transplantation both in its current research incarnation and its potentiality with respect to clinical treatment.
Allyse most directly addresses a potential gender disparity in current transplantation research by noting the amount of controversy generated by uterine transplantation research compared to penile transplantation research. Her PubMed search produced more than eight times the number of ethics commentaries on the former than the latter, and she laments that proposed eligibility criteria include a potential participant’s plans to reproduce for uterine but not penile transplantation research. She also notes that many of the criteria proposed by Bruno and Arora and others are more stringent than for other forms of assisted reproductive technology, such as in vitro fertilization. While we think that certain eligibility criteria for recipient selection are ethically justified in uterine transplantation research to minimize risks to human subjects and maximize scientific knowledge (i.e., research participants should intend to become pregnant to allow for the study of the gestational process in a transplanted uterus in addition to the transplant itself), we appreciate the concern with certain proposed criteria being overly regulatory of women’s bodies and the need for equitable allocation if uterine transplantation becomes a clinical treatment.
Bruno and Arora advocate for wariness of surrogate decision-making for deceased uterus donation, in part because the public lacks familiarity with the procedure (and thus potential donors may not have thought about whether uterus donation aligns with their preferences like other organ donation decisions) and in part because of the perception that reproductive decision-making is intensely personal in a way that makes the use of a surrogate inappropriate. Williams rightly highlights that the role of a surrogate decision-maker is not merely to report a donor’s known intentions, but to apply the donor’s values and beliefs to the sometimes novel decision at hand. Indeed, Williams asks an incisive question: If we accept surrogate decision-making in other deceased donor situations, why not this one? We would posit the answer has something to do with reproductive exceptionalism. We agree with Bruno and Arora that reproductive decision-making is a highly personal process that implicates an individual’s deeply held beliefs, but we challenge the notion that it is unsusceptible to surrogate decision-making or that a potential donor’s loved one is incapable of speaking to their wishes regarding uterus donation. Surrogates do and should speak to their loved ones’ wishes in highly value-laden contexts like end-of-life care and reproductive decision-making when necessary, and uterus donation should be no different.
Spillman and Sade bring attention to the possibilities of uterine transplantation for transwomen, including directed donation from transmen to transwomen. We laud the attention paid to the aspirations of transwomen and the potentialities for uterine transplantation as part of the transition process. However, we would note that transwomen are already “women in full” regardless of which aspects of transition they pursue (be it social transition, hormone therapy, various surgical interventions, some combination of these, or none at all) and would be reticent to characterize uterine transplantation as the “final step in transgender surgery.” Moreover, we think sweeping statements that “[w]omen are more complex than men” and that gestation and giving birth represent “the quintessential characteristic[s] of womanhood” are unhelpful and counterproductive to nuanced discourse about women’s motivations, values, and decision-making processes.
Several commentators purport to know that uterine transplantation cannot be worth it for the women seeking this intervention. Shapiro and Ward posit, “It is difficult to conceive how the experience of gestation, especially without parturition [childbirth], can be sufficiently important to justify the risk to all parties involved in [uterine transplantation]” (36). As part of our uterine transplantation research protocol, research team members engage potential participants in in-depth discussions regarding potential risks and explore the ways in which the experience of a pregnancy through uterine transplantation may be different from a pregnancy without uterine transplantation (i.e., the requirement to undergo a caesarian section, may not feel contractions or fetal movement in the same way, more frequent doctors’ appointments), among other relevant informed consent issues. These potential participants evaluate whether the reasons that motivate them outweigh the risks and uncertainties. Interestingly, while Padela and Clayville claim that uterine transplantation is inconsistent with Islamic theology, in our experience women of different faiths, including Muslim women, do seek participation in uterine transplantation research. In fact, some among this group view uterine transplantation as the only theologically permissible way to have a child given their uterine factor infertility and explicitly articulate its consistency with their religious perspective, while others also view gestational surrogacy as theologically permissible but face logistical hurdles in accessing it.
One of the ongoing critiques of uterine transplantation is its potential to reinscribe gender norms and expectations regarding womanhood and motherhood. Mertes and Van Assche worry that uterine transplantation reinforces the notion that not having a genetically linked and personally gestated child is a “lesser life.” Perhaps uterine transplantation does reinforce this notion to some degree, and perhaps it simultaneously respects the internally held values and beliefs of the women who share this notion. In living with this duality, we can assess for undue pressure or coercion (whether familial or cultural) and its impact on a woman’s ability to appreciate risks and give fully informed consent while also respecting the perspectives of individuals whose worldview aligns with that of our pronatalist society. Other commentators have noted that if societal pressure informs a woman’s belief that it is of value for women to have children (or have children a certain way), it is not unreasonable to think that society has an obligation to support the endeavor to actualize such belief.
It remains to be seen whether uterine transplantation will move beyond experimental trials. Will it be safe and efficacious enough? Will the costs be prohibitive? Will there be enough donor uteri? As research continues, it is important to be mindful of the assumptions about gender we make, acknowledge that we cannot always recognize our unconscious biases, and work to understand women’s motivations, values, and perspectives regarding uterine transplantation. More research is needed to understand these perspectives and the safeguards supporting women’s autonomy and robust informed consent. This issue of the American Journal of Bioethics represents an advancement of the discourse regarding ethical issues in uterine transplantation and an opportunity to reflect on the ways in which notions of gender, reproductive decision-making, and women’s varied perspectives influence this discourse.