Ethics and Research with Children: A Case-Based Approach

By Eric Kodish | Go to book overview

12
Research Ethics and Maternal-Fetal Surgery

Rebecca Dresser


CASE DESCRIPTION

In April 1999, the Wall Street Journal reported on a new surgical procedure designed to reduce the damage done by spina bifida (also known as myelomeningocele), a relatively common birth defect that can cause developmental delay, learning disabilities, impaired ability to walk, and bladder and bowel incontinence (Winslow, 1999). Although the precise causes of the disabilities are not fully understood, they are triggered in early embryonic development when bone and skin tissue fails to enclose the spinal cord.

Spina bifida can be diagnosed in the second trimester of pregnancy. Some women elect to terminate their pregnancies to avoid having an affected child, but others do not. Standard therapy for infants born with spina bifida is surgery to enclose the spinal cord. In most cases, physicians also insert a shunt to drain excess fluid in the brain (hydrocephalus) that can lead to further neurological impairment. The infants often are delivered by cesarean section to avoid added damage to the spinal cord (Olutoye & Adzick, 1999).

In an effort to improve the children's health, physicians devised a surgical intervention that is performed on pregnant women and fetuses at between 22 and 30 weeks of gestation. In the surgery, the woman's uterus is lifted out of her body, the fetus is exposed (in a process referred to as “open” surgery), and the abnormal opening in the fetal spinal cord is closed. The uterus is then replaced and the pregnancy is continued. The basis for this procedure is the hope that earlier repair will reduce damage to the spinal cord during the remainder of fetal development.

The Wall Street Journal reported that two centers, Vanderbilt University Medical Center and Children's Hospital of Philadelphia (CHOP), were offering the surgery. Indeed, the news report suggested that the two centers were competing with each other for patients and positive publicity from the innovation. The journal story focused on the entrepreneurial dimensions of the hospitals' actions

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