Abstract
The aim of this study was to investigate the personal, ethical, and financial perspectives of individuals with Mayer-Rokitansky-Küster-Hauser syndrome (MRKH), a congenital uterine factor infertility condition, towards uterine transplantation (UTx). Cross-sectional quantitative survey analysis. A 60-item anonymous electronic questionnaire was advertised to international members of the Beautiful You MRKH Foundation via social media sites (Facebook, Instagram, and Twitter). The survey contained UTx educational materials followed by questions assessing participants’ baseline knowledge, global perceptions, financial concerns, and ethical considerations regarding UTx. We received 281 responses (88% completion rate), with a mean participant age of 28.2 ± 9.8 years. After reviewing the UTx education material, the majority of participants considered receiving a uterine transplant (73%), felt it should be an option for all women with uterine factor infertility (86%), and believed it should be covered by health insurance (78%). Respondents perceived the benefits of the procedure to outweigh the risks (67%) and considered it to be an ethical procedure (82%). Although the majority of participants have or would consider adoption (85%) and gestational surrogacy (81%) to have children, a large percentage indicated they would prefer to give birth to their own child (79%). Almost half of participants (49%) reported a willingness to spend over $10,000 out of pocket to receive a UTx procedure. When asked to rank the risk of UTx to self, donor, and fetus in order of personal importance, (21%) ranked their own safety last. The results of this analysis have important implications for the future of UTx. There is a profound desire in the MRKH community for UTx to become more widely available and affordable. MRKH patients may represent a vulnerable population requiring special considerations for informed consent and rigorous evaluation for UTx. Providers caring for MRKH patients should be prepared to educate about UTx and thoughtfully engage with news and media outlets to communicate evidence-supported information.
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