1. Ethical Considerations Concerning Amnioinfusions for Treating Fetal Bilateral Renal Agenesis
- Author
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William Polzin, Michael J. Somers, Eric B. Jelin, Jeremy Sugarman, Christine B. Hertenstein, Elena Gates, Niraj M. Desai, Leslie Meltzer Henry, Alicia M. Neu, Ronald M. Ramus, Timothy E. Bunchman, Anna C. Mastroianni, Megan Kasimatis Singleton, Jean Anderson, Emily Johnson, Steven J. Ralston, Renee D. Boss, Ahmet A. Baschat, Lawrence M. Nogee, Jessica L. Bienstock, Jaime Herrera Beutler, Aviva Goldberg, Karen C. Wang, Paul C. Grimm, and Mark R. Mercurio
- Subjects
medicine.medical_specialty ,Maternal Health ,030232 urology & nephrology ,MEDLINE ,Kidney ,Risk Assessment ,Oligohydramnios ,Ultrasonography, Prenatal ,Congenital Abnormalities ,03 medical and health sciences ,0302 clinical medicine ,Pregnancy ,Informed consent ,Intervention (counseling) ,medicine ,Humans ,Amnion ,Justice (ethics) ,Risks and benefits ,Intensive care medicine ,Infusions, Intralesional ,Informed Consent ,030219 obstetrics & reproductive medicine ,business.industry ,Pregnancy Outcome ,Obstetrics and Gynecology ,Bilateral Renal Agenesis ,Fetal Diseases ,Female ,Kidney Diseases ,Live birth ,business ,Risk assessment - Abstract
Congenital bilateral renal agenesis has been considered a uniformly fatal condition. However, the report of using serial amnioinfusions followed by the live birth in 2012 and ongoing survival of a child with bilateral renal agenesis has generated hope, but also considerable controversy over an array of complex clinical and ethical concerns. To assess the ethical concerns associated with using serial amnioinfusions for bilateral renal agenesis, we assembled a multidisciplinary group to map the ethical issues relevant to this novel intervention. The key ethical issues identified were related to 1) potential risks and benefits, 2) clinical care compared with innovation compared with research, 3) counseling of expectant parents, 4) consent, 5) outcome measures, 6) access and justice, 7) conflicts of interest, 8) effects on clinicians, 9) effects on institutions, and 10) long-term societal implications. These ethical issues should be addressed in conjunction with systematic efforts to examine whether this intervention is safe and effective. Future work should capture the experiences of expectant parents, women who undergo serial amnioinfusions, those born with bilateral renal agenesis and their families as well as clinicians confronted with making difficult choices related to it.
- Published
- 2018
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