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

  • Alana N. Thomas EMAIL logo , Laurence B. McCullough , Frank A. Chervenak and Frank X. Placencia
Published/Copyright: February 21, 2017

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.


Corresponding author: Alana N. Thomas, MD, Baylor college of Medicine, Texas Children’s Hospital, Department of Pediatrics, Section of Neonatology, 6621 Fannin St, WT-6104, Houston, TX 77030, USA, Tel.: + (832) 826-1380, Fax: + (832) 825-1386

  1. Author’s statement

  2. Conflict of interest: Authors state no conflict of interest.

  3. Material and methods: Informed consent: Informed consent has been obtained from all individuals included in this study.

  4. Ethical approval: The research related to human subject use has complied with all the relevant national regulations, and institutional policies, and is in accordance with the tenets of the Helsinki Declaration, and has been approved by the authors’ institutional review board or equivalent committee.

  5. Funding source: Neonatology Evangelina “Evie” Whitlock Award, Texas Children’s Hospital Neonatology “Bad Pants” Fund, and NIH grant K23HD076938; the sponsors had no involvement in study design or in the collection, analysis and interpretation of data.

  6. Clinical trials registration: Not applicable.

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Received: 2016-11-15
Accepted: 2016-12-28
Published Online: 2017-2-21
Published in Print: 2017-7-26

©2017 Walter de Gruyter GmbH, Berlin/Boston

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