Evidence-based, ethically justified counseling for fetal bilateral renal agenesis

J Perinat Med. 2017 Jul 26;45(5):585-594. doi: 10.1515/jpm-2016-0367.

Abstract

Background: Not much data are available on the natural history of bilateral renal agenesis, as the medical community does not typically offer aggressive obstetric or neonatal care asbilateral renal agenesis has been accepted as a lethal condition.

Aim: To provide an evidence-based, ethically justified approach to counseling pregnant women about the obstetric management of bilateral renal agenesis.

Study design: A systematic literature search was performed using multiple databases. We deploy an ethical analysis of the results of the literature search on the basis of the professional responsibility model of obstetric ethics.

Results: Eighteen articles met the inclusion criteria for review. With the exception of a single case study using serial amnioinfusion, there has been no other case of survival following dialysis and transplantation documented. Liveborn babies die during the neonatal period. Counseling pregnant women about management of pregnancies complicated by bilateral renal agenesis should be guided by beneficence-based judgment informed by evidence about outcomes.

Conclusions: Based on the ethical analysis of the results from this review, without experimental obstetric intervention, neonatal mortality rates will continue to be 100%. Serial amnioinfusion therefore should not be offered as treatment, but only as approved innovation or research.

Keywords: Amnioinfusion; beneficence; bilateral renal agenesis; clinical decision making; counseling; ethics; fetal; neonatal; obstetric; perinatal.

Publication types

  • Review

MeSH terms

  • Congenital Abnormalities*
  • Counseling / ethics
  • Evidence-Based Practice
  • Female
  • Humans
  • Kidney / abnormalities*
  • Kidney Diseases / congenital*
  • Pregnancy
  • Prenatal Diagnosis

Supplementary concepts

  • Hereditary renal agenesis