July 30, 1998
Contact: Jennifer McNulty (831) 459-2495; [email protected]
New Book Raises Ethical Questions About Experimental Fetal Surgery
FOR IMMEDIATE RELEASE
SANTA CRUZ, CA--Fetal surgery is being heralded by many as the latest medical miracle, but a new book by sociologist Monica J. Casper of the University of California, Santa Cruz, raises disturbing questions about the safety of fetal surgery and the risks it poses to both mother and fetus.
In The Making of the Unborn Patient: A Social Anatomy of Fetal Surgery (New Brunswick, N.J.; Rutgers University Press, 1998) Casper raises medical, ethical, and political questions about fetal surgery, which, although still largely experimental, is becoming a more routine treatment for some maladies.
The technique involves the surgical repair of life-threatening fetal abnormalities by partially removing the fetus from the womb, placing it on the pregnant woman's abdomen, performing the surgical procedure, and returning the fetus to the uterus. Typically performed early in the second trimester of pregnancy, fetal surgery is used to correct life- threatening structural defects and abnormalities, such as blocked urinary tracts and congenital diaphragmatic hernias, and to remove tumors.
But fetal surgery is a risky proposition for both mother and fetus, according to Casper, an affiliate of the Stanford University Center for Biomedical Ethics whose research is based in part on her study of fetal surgeries performed at a major metropolitan hospital. (To protect the privacy of patients and medical staff, Casper does not identify the hospital in her book.)
In the first detailed examination of fetal surgery, Casper found that the risks include a fetal mortality rate that averages about 60 percent and can exceed 85 percent for some procedures. Because labor typically begins when the human uterus is opened, mothers of fetuses that survive must be confined to bed rest on antilabor medications for the duration of the pregnancy. And such pregnancies always end with premature Cesarean- section deliveries.
The risks don't end even with a "successful" procedure because newborns who survive fetal surgery require additional treatment after birth and may remain impaired even after treatment. The surgery may jeopardize a woman's ability to carry subsequent pregnancies to term, and it raises serious ethical questions about maternal sacrifice, the status of the fetus, access to medical care, and medical spending.
"Fetal surgery has been seen largely as a pediatric issue, not a matter of women's health," said Casper. "The ethical questions are enormous: Is the fetus a person? Is surgery appropriate if the fetus still faces an uncertain future due to surgical complications or premature delivery? Like interventions at the end of life, does it make sense to try to save the life of a fetus at all costs, financial and otherwise? How does fetal surgery fit into the politics of women's reproduction? Nobody has raised these social justice and resource questions."
Fetal surgery has been controversial since its inception three decades ago, yet it is proceeding rapidly without public debate about its consequences. Casper's book is the first in-depth study of the social, cultural, and historical aspects of fetal surgery. Some questions posed by Casper include:
* Who is the patient--the fetus or the woman?
* Is fetal surgery a women's health issue or a pediatric concern?
* What is an acceptable level of risk--for the mother and the fetus?
* How does fetal surgery affect definitions of the beginning of life?
* Should limited health care resources be dedicated to fetal surgery?
* If fetal surgery becomes established medical treatment, could mothers be forced to undergo the procedure against their will?
* What are the long-term effects for the fetus of temporary removal from the womb?
* Is it ethical to perform surgery on a doomed fetus if the best outcome is a severely disabled infant?
Despite the pressing medical and ethical questions surrounding fetal surgery, the procedure remains shrouded in secrecy at the few medical centers in the country that are pioneering fetal surgical techniques. Casper had to file Freedom of Information Act requests to obtain data on the 100 or so surgeries that had been performed at the hospital where she was conducting her research, and she maintains that surgeons blocked her access to prospective and actual patients after they gleaned the scope of her research.
Nevertheless, the ethics of fetal surgery are being decided in the public arena, where doctors pioneering the procedure are being held up as heroes and antiabortion groups are embracing the procedure as a "pro-life" practice.
"Fetal surgery certainly has the potential to change the face of abortion politics by helping to establish the fetus as a patient and a person independent of the mother," said Casper. "Similarly, it could transform the fields of obstetrics and pediatrics by redrawing the traditional boundaries between mother, baby, and doctor."
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To reach Monica J. Casper: Office: (831) 459-3837 E-mail: [email protected]
To request a review copy of The Making of the Unborn Patient: A Social Anatomy of Fetal Surgery, call the UCSC Public Information Office at (831) 459-2495.
This release is also available on the World Wide Web at UCSC's "Services for Journalists" site (http://www.ucsc.edu/news/journalist/) or via modem from UC NewsWire (209-244-6971).
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