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Living Uterus Donors: The Role of Future Research in Addressing Ethical Considerations

Iltis, Ana S. PhD

doi: 10.1097/TP.0000000000001583
Commentaries

The author raises important ethical issues regarding living donor uterus transplantation and areas for future research. These include assessing the risk-benefit profile of living donor uterus transplants, minimizing risks of harm and maximizing potential benefits, and obtaining valid informed consent from living donors. An additional question is whether, and if so, when, it is ethically permissible to use living uterus donors.

1 Center for Bioethics, Health and Society, and Department of Philosophy, Wake Forest University, Winston-Salem, NC; I.M. Sechenov First Moscow State Medical University, Moscow, Russia.

Received 29 October 2016. Revision received 4 November 2016.

Accepted 9 November 2016.

The author declares no funding or conflicts of interest.

A.S.I. is the sole author for this work and did all of the research and writing for this submission.

Correspondence: Ana S. Iltis, PhD, Center for Bioethics, Health and Society, 1834 Wake Forest Rd., Winston-Salem, NC 27106. (iltisas@wfu.edu and iltisas@gmail.com).

Kvarnström et al1 report on the outcomes of living uterus donors in this issue complements existing reports on recipient outcomes and describes nonnegligible risks of harm to living uterus donors. The report raises important ethical issues regarding living donor uterus transplantation and areas for future research. These include assessing the risk-benefit profile of living donor uterus transplants, minimizing risks of harm and maximizing potential benefits, and obtaining valid informed consent from living donors. An additional question is whether, and if so, when, it is ethically permissible to use living uterus donors.

Living organ donors assume risks of harm and burdens primarily or exclusively for potential benefit to others. Kvarnström et al1 stipulate that for living uterus donation, “only a minimal risk is accepted” because it is a non–life-saving transplant. Determining whether the risk of harm to living donors is minimal requires long-term research that explores the 5 dimensions of risk: identity, permanence, timing, probability, and value or seriousness.2 Risk-benefit assessment of living donor uterus transplantation involves complex interpersonal comparisons similar to those in other living donor scenarios and human research. Finally, it requires comparing different categories of harms and benefits, such as physical, psychological, and socioeconomic.

Future research to define the risk-benefit profile of living donor uterus transplantation is necessary. Medical harms, such as urinary tract and gastrointestinal problems, psychological harms, such as depression and distress, and socioeconomic harms should be measured.1 Additional considerations Kvarnström et al1 identify include the experience of regret and body image concerns. Future research should combine qualitative and quantitative methods. Qualitative research can reveal subtle differences among experiences and illuminate our understanding of quantitative research findings.3 Personal narratives also can elucidate previously undetected harms and illustrate ways to improve practice, as we see in accounts from living kidney and liver donors.4 Without systematic long-term data collection from living uterus donors and recipients, risk-benefit assessments of living uterus transplantation will remain underdetermined.

One criticism of living kidney and liver transplantation is the failure from early on to follow large numbers of donors for a significant time subsequent to donation.5 As Kvarnström et al note, recent studies of living kidney donors have shown that they face an increased risk for end stage renal disease and decrease in psychological function.1,5,6 Teams pursuing living donor uterus transplants should plan prospectively to study long-term outcomes in donors to avoid this shortcoming. Kvarnström et al's report is a commendable first step. A living uterus donor registry will be an important second step.

Long-term research on living uterus donors also can help to fulfill the obligation to minimize risks of harm and maximize potential benefits. Kvarnström et al1 argue for the importance of optimizing living uterus donors—choosing donors for whom donation poses a lower risk of harm and whose donated uterus is likely to be transplanted successfully. Future research should evaluate ways of identifying less suitable donors preoperatively. Deciding when, if ever, donation by a nonoptimal donor is acceptable involves medical and value judgments, as is the case in other living donor situations.7 A mother-daughter or sister-sister pair, for instance, might want to attempt donation and transplantation even if the donor is not optimal. They might argue that, for them, the potential benefits justify the risks of harm and that they accept more than minimal risk.

Accurate information about long-term risks of harm and potential benefits to living uterus donors also is necessary to manage donor expectations and to obtain valid informed consent.1 Living uterus donors' insights about what they understood and what they would have liked to know before donation could help to improve the quality of informed consent.

A significant ethical question is whether it is appropriate to pursue living donor uterus transplantation, especially before exhausting deceased donor options.8 Living kidney and liver donation has been justified by scarcity of donor organs, the relative safety of donation compared with the significant morbidity and mortality recipients face without transplantation, and improved recipient outcomes compared to organs from deceased donors. The Swedish team that performed the uterus transplants on which Kvarnström et al report noted similar factors in justifying their use of living donors, particularly the scarcity of cadaver donors in Sweden and the expectation of better recipient outcomes.9 They also cited pragmatic considerations, such as the need to assemble surgeons from different continents and to schedule operating rooms on weekends.9

Justifications for living donor uterus transplantation merit further inquiry. Demand for uterus transplantation is likely to remain much lower than demand for kidneys and livers, and we do not anticipate an emergent or urgent need for uterus transplantation. Preference for living donor uterus transplantation requires establishing that the availability of deceased donor uteri is expected to be inadequate. Although infertility involves significant psychosocial burdens, patients awaiting kidney and liver transplantation face much greater morbidity and mortality. Some argue that living donor uterus transplants are likely to yield better recipient outcomes, whereas others believe deceased donor uteri will be better.8-10 To date, most uterus transplants have used living donors, and all successful pregnancies have occurred in recipients of living donor organs. But the numbers remain too small to compare outcomes and abandon deceased donor uterus transplantation. Even if living donor uteri are better for recipients, whether the potential benefit is sufficiently great to justify risks of harm to living donors remains to be seen. Superior long-term graft survival with a living donor organ is less important in uterus transplantation because the goal is not lifelong transplant. Transplanted uteri will be removed after 1 or 2 births. Finally, it seems reasonable to attempt to overcome pragmatic barriers such as scheduling constraints before turning to living donors.

Insofar as living donor uterus transplantation continues to be studied, research on the long-term effects on living donors and recipients over an extended period is essential for ethical practice. Those findings will be essential to assessing the risk-benefit profile of living donor uterus transplantation, to minimizing risks of harm and maximizing potential benefits, and to obtaining valid informed consent.

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REFERENCES

1. Kvarnström N, Dahm-Kähler P, Olausson M, et al. Living donors of the initial observational study of uterus transplantation—psychological and medical follow up until one year after surgery in the nine cases. Transplantation. 2017;101:664–670.
2. Bogardus ST Jr, Holmboe E, Jekel JF. Perils, pitfalls, and possibilities in talking about medical risk. JAMA. 1999;281:1037–1041.
3. Kon AA. The role of empirical research in bioethics. Am J Bioeth. 2009;9:59–65.
4. Gordon EJ. Living organ donors' stories: (unmet) expectations about informed consent, outcomes, and care. Narrat Inq Bioeth. 2012;2:1–6.
5. Ross LF. Living kidney donors and ESRD. Am J Kidney Dis. 2015;66:23–27.
6. Wirken L, van Middendorp H, Hooghof CW, et al. The course and predictors of health-related quality of life in living kidney donors: a systematic review and meta-analysis. Am J Transplant. 2015;15:3041–3054.
7. Iltis AS. Risk-taking: Individual and family interests. J Med Philos. 2015;40:437–450.
8. Williams N. Should deceased donation be morally preferred in uterine transplantation trials? Bioethics. 2016;30:415–424.
9. Brännström M, Johannesson L, Dahm-Kähler P, et al. First clinical uterus transplantation trial: a six-month report. Fertil Steril. 2014;101:1228–1236.
10. Nair A, Stega J, Smith JR, et al. Uterus transplant: evidence and ethics. Ann N Y Acad Sci. 2008;1127:83–91.
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