Diagnosis of infertility, effect on the recipient’s life and decision to pursue uterus transplantation
What was it like to be diagnosed with infertility? What did that diagnosis mean to you? How has the diagnosis of infertility affected your life? What did you believe caused your infertility? What kinds of options for parenthood did you think were available to you as a person with infertility? How did decide to get a uterus transplant? How did you compare uterus transplantation against the options of surrogacy and adoption? What risks of uterus transplantation were you concerned about? What did your family and friends think about uterus transplantation? How did participation in the uterus transplant trial affect your identity as a person with infertility?
Experience with uterus transplantation
What do you wish you had known prior to uterus transplantation? How did your experience of UT compare to what you were told about it? Overall, what do you think about the informed consent process for uterus transplantation? How could it be improved? Based on your experience with uterus transplant, was the experience worth it? What advice would you give to women considering uterus transplantation? Overall, how risky was your experience with uterus transplantation? Please rate on a scale from 1% (not at all risky) to 100% (extremely risky). What is the minimum chance of success (defined as healthy live birth) from uterus transplantation that women should be able to accept? Please rate on a scale from 1% (1/100 women will have a successful live birth) to 100% (all recipients will have a successful live birth)
General perceptions of uterus transplantation
Women undergoing uterus transplant and medical researchers have many ideas of what counts as a successful transplant. Women view giving birth to a healthy baby as the absolute sign of success. Medical researchers agree with that, and also have additional measures of success including: technical success of implantation, achieving pregnancy, maintaining a full-term pregnancy, absence of risks to the mother/foetus, and absence of rejection. Can you think of any other measures that medical researchers should study? Which of these measures is most important to you? There is debate among medical researchers about whether or not uterus transplant should be offered to women with uterine factor infertility. Some researchers believe that this option expands the reproductive freedom of women. Others believe that the option of uterus transplantation puts social pressure on women to choose uterus transplantation above adoption or surrogacy, and therefore undermines reproductive freedom. What do you think about this? How do you respond to claims made against uterus transplantation that women should adopt a baby or use a surrogate instead of go through uterus transplantation? Some women who get a uterus transplant do not have a successful experience. That is, their uterus transplant fails and has to be taken out or they do not have a successful pregnancy despite having a functional uterus. Some people believe that transplantation should be offered as a standard surgical procedure given that there are failures. What is your thought about this Uterus transplantation is currently only available to get through participating in clinical trials and is therefore paid for with research funding. Some medical researchers claim that making uterus transplantation a clinical procedure, paid for by medical insurance or other means is not worth the societal investment. What is your take on this? What needs to happen before society (e.g., insurance companies) should invest in this option? There have been successful live births after both deceased donor uterus transplantation and living donor uterus transplantation. There is debate among medical researchers about which type of donor is preferred. What would your preference of donor be given the options of a deceased donor, a living related or known donor, or a living non- directed or unknown donor?